I was not familiar with this description, and it seemed to me to be a useful way to think about how autism is viewed. Dr. Insel offers four different perspectives of autism, dividing his world into four kingdoms, of which he is perhaps the Emperor, since each Kingdom’s name begins with “I”…
Illness: This is the classic model of autism as a medical condition requiring treatment. Autism was defined as an innate condition in the first two classic papers that identified autism as a separate identifiable condition. Leo Kanner (1943) termed the condition inborn autistic disturbance of affective contact. Hans Asperger (published in 1944, although probably written before Kanner’s paper) called it “autistic psychopathy.”
Asperger explicitly stated that he believed autism was genetic in origin, based on his observation of familial similarities. Kanner was more equivocal, and later changed his view to be more in line with the then-prevailing psychiatric thinking that many deviant behaviors, such as homosexuality and autism, were caused by trauma.
The clinician who made the presentation at Simon’s Rock was clearly in this school, although she did give a nod to the Injury Kingdom.
Identity: This is where I live. Autism is a different way of being, not a disorder. Neurodiversity is to be praised, not shunned. Autism is also a disability in a society that is not accommodating. As Insel states, the “focus is on community supports, educational and occupational services, and civil rights.” The core example of this kind of advocacy is ASAN.
Injury: People in the Injury Kingdom are searching for the “cause” of autism, so that it can be prevented or cured. There is a close alliance here with the Illness Kingdom, though the way Insel describes “injury” he seems to be talking mostly about vaccines. For those of us in the Identity Kingdom, there is very little functional difference between illness and injury; they both smack of eugenics, and they both suggest that autism is a defect, not just a natural variation in the human genome.
Insight: The residents of this Kingdom sound like anthropologists, studying a strange culture. This, too, seems to be based on a deficit model, which is an approach rejected by those of us in the Identity Kingdom. I’ve participated in many brain studies, thereby learning much about how different my circuitry is from that of neurotypicals. But different does not equate with inferior, and if research starts with that premise (as most autism research seems to do), the results will likely be distorted and uninformative.
Observations About the Presentation
Given that the speaker and I seem to live in different Kingdoms, it is not surprising that I found things in the presentation that were disturbing or that I disagreed with. There were also excellent points made about aspects of autism, such as the idea that “repetitive behaviors” can be adaptive. This made me think of Ted Williams as an example of obsessive repetition. There are also many autistic people who are (or historically have been) very talented in music and mathematics, disciplines that are highly structured.
One of the odd things mentioned in the talk was the definition of biomarkers. It was the first time I’d ever heard of “behavior” called a biomarker. In fact, that seems to me to be self-contradictory. The reason biomarkers (such as a blood test or brain scan) are sought out is to avoid having the subjective judgment required to classify behaviors, which is currently the only accepted way to diagnose autism.
Having a reliable biomarker, it was said, would increase the chances of identifying autism early in life, thus being able to begin interventions sooner. I wish more had been said about what those interventions are, since I’ve learned about a wide variety of “treatments” — ranging from harmful to ineffective. I’m not at all sure why being “social” is such a desirable outcome, given the strange behaviors of most neurotypicals.
Sensory issues were hardly mentioned at all, although they are central to the experience of being autistic. When I arrived at the lecture hall, the lights were so bright that I felt a need to request they be dimmed (an accommodation the organizers were happy to make). At one point, a video was played, describing the default mode network (DMN). I could not understand what was being said because there was music playing at the same time that someone was speaking. I suppose for neurotypicals, it is “background” music, but since it was louder than the voice, it was all I could hear. These are some of the amusing things that autistics encounter in this neurotypical-dominated world. I say amusing because, even though they can be annoying or even painful, it continues to amaze me that many programs or meetings I attend that are about autism are given in environments that are hostile to my kind.
The Language of Autism
Language cues reveal much about social attitudes toward autism. “On the spectrum” has become a universal euphemism for “autistic” to the point that no one really knows what the “spectrum” is. Or, more to the point, the word is used in so many different ways that it has no real meaning. Originally, it referred to IQ range, but that seems to have fallen by the wayside. There was a graph in this presentation showing “severity” levels of autism. The implication here, of course, is that autism is a negative thing. One doesn’t talk about the “severity” of eye color.
In the Injury Kingdom, it is often said that various things increase the “risk” of autism, implying, again, that autism is a bad thing. This has spawned many spoofs in the Identity Kingdom, declaring that “autism is caused by being born” or the classic “Studies Prove It: Autism is Linked to Being a Carbon-Based Life Form.” The rise in diagnostic rates in recent years has sent people scurrying to find these “causes” when, in fact, the increase in entirely a function of increased awareness and changes in diagnostic criteria. An authoritative view of these trends is provided in the wonderful book NeuroTribes, by Steve Silberman.
Those in the Illness Kingdom often talk about how the autistic brain has “too little” or “too much” connectivity in various regions, which is a value judgment, not a scientific fact. Despite years of academic research that shows there is no connection between autism and intellectual capacity, the myth persists that a high number of autistic people are intellectually impaired. It just ain’t so. I’ve recently heard numbers such as 50% or 38% or you-name-it. The truth is closer to 2% or 3%, the same as in the general population.
More on the Origins of the Illness Kingdom
My brief remarks in the paragraph above do not do justice to the early works of Asperger and Kanner, and the debate that ensued (and still continues) over the source of autism and how to deal with the condition. There is a good discussion in a book by Chloe Silverman, Understanding Autism: Parents, Doctors, and the History of a Disorder (pp. 36+37 and elsewhere).
All of this deserves much more extensive treatment than I can give it in this short post. Stay tuned! Meanwhile, my friend John Robison has shared his thoughts on part of the debate in his award-winning post for Psychology Today, “Is the Definition of Autism Too Broad?” Well worth a read.
Kudos to Simon’s Rock
I’m delighted that the college sponsored this lecture and discussion, which they made open to the public. Although I (obviously) did not agree with everything the speaker presented, it was good to see the keen interest in autism among the students and the guests. I hope the college will follow up with more talks on this important subject.