Shifting the Stigma is Not Okay

In the wake of the Sandy Hook tragedy, a wave of articles has appeared that have protested the almost immediate linking of the perpetrator with autism. As I write this, it has been informally confirmed that he did have such a diagnosis, but not whether he had been taking psychotropic medication at the time of his shooting rampage.

The unfortunate early mention of a possible diagnosis of Asperger syndrome was taken by many to imply that his being autistic somehow “explained” his violent criminal act. In fact, of course, autism is not causally linked with violence, criminal behavior, or mental illness.

Many advocates and self-advocates have made this point more eloquently than I possibly could, and have bemoaned the stigmatization that inevitably accompanies such false attributions. Ari Ne’ewman has written an eloquent warning about the dangers of stereotyping. Rachel Cohen-Rottenberg has penned an essay on scapegoating. Emily Willingham has protested in a NYT blog piece (and, with her usual thoroughness, supplied us with many links to other articles and essays). My friend and fellow AANE Board member, Lucy Berrington, has written an extensive PT blog post containing links to and descriptions of many, many more such postings. Lucy has also put AANE’s statement on the Newtown incident on the AANE blog.

So, in light of all of this, I am very troubled by an article that appeared on The Atlantic website on December 19, entitled “Autism Is Not Psychosis.” The author “is a neuroscience journalist” according to the introductory blurb on the site, and I am familiar with her work. My critique here is not directed at the writer or her work, which I have always found to be excellent, and I’m sure her reporting here is an accurate reflection of current thinking in the field. Instead, I am questioning the state of the art on which she is reporting, and with which I find much to disagree.

Autism Is Not Psychosis. So far, so good. The title is spot on, and the article makes many good points. Along the way, though, there are passages that I find annoying, and the report contains much information that is, in my opinion, just plain wrong.

…autistic people are actually less likely to commit crimes compared to those without the condition. There is, however, another disorder that can both be linked with planned violence and mistaken for autism, which may account for part of what went wrong, in this instance or others. That’s psychosis, which can occur as part of schizophrenia or in some cases of severe depression or drug misuse.

Thus, autism is, implicitly, a “disorder” – this is a very common description, of course, but I neither like the label nor think it is accurate. Many of my autistic friends agree with me that we represent a “different order” and that autism is not an abnormal brain condition. There is a fine line between difference and disorder, and psychosis seems to live not too far over that line.

At this point, I should insert my usual disclaimer that I am not an expert in the biology of autism. I have no formal training in this field nor in related disciplines, such as psychology and medicine. I have read widely, however, and have a keen interest in the topic, and I have spent the last few years trying to puzzle out why I am the way I am. Of equal importance, I have nearly 67 years of experience, living as an autistic human being. And, over the past several years, I have exchanged views with literally hundreds of other autistic people, as well as clinicians, family members, spouses, and so on; both online and in person. I think I have a pretty good understanding of what it means to be autistic, although I admit I always have more to learn.

One of the things that I have learned is that autism, schizophrenia, and bipolar (and perhaps other conditions, such as dyslexia) are very closely related. So, the title of this post is a protest against one of the themes of the article under review, which, as I see it, is to shift the stigma of associating psychosis with autism to associating it with schizophrenia, which in my mind is not much of a shift at all. To say that psychosis “can occur as part of schizophrenia” is about as inaccurate as saying it can occur “as part of” autism. Any person on the planet can have a psychotic episode, and many do. Some of those people will be autistic or schizophrenic or blue-eyed, but to say that such an episode is “part of” some characteristic is baseless.

Another perspective I have is that autism, schizophrenia, and bipolar (and related labels) are names given to brain-based differences that are perfectly natural and okay. The literature is full of pathologizing language, such as “disease” and “disorder.” If you start from such a premise, there is a natural human bias toward finding evidence to support it. This is a form of “motivated reasoning” where we start with the conclusion and find ways to justify it.

If, however, you start from a place of believing that these differences are a natural part of the human condition, you develop an entirely different strategy for dealing with them. And, in all of what I say, I do not mean to belittle the extreme difficulties encountered by many people who have these labels. I do consider autism to be a disability, because, at a minimum, living in an alien world makes every day a challenging experience. Trust me, I know.

Like autism, schizophrenia is now believed to be a condition involving differences in early brain development, which probably begin in the womb, even though symptoms may not appear until years or even decades later.

Early symptoms of schizophrenia can sometimes be indistinguishable from those of autism: they include social withdrawal; communication problems and restricted speech; odd, repetitive behavior; an apparent lack of emotion or emotional expression and often, lack of conformity in terms of hygiene and dress. In both cases, the symptoms can start in early childhood…

Perhaps the reason that the symptoms of autism and schizophrenia are often indistinguishable is that they are really the same thing. The latest brain-imaging techniques have failed to find a way to clearly differentiate the brains of people with these diagnoses. In a study published last month by Columbia University Medical Center, the authors as much as said they couldn’t tell them apart:

The study also uncovered an intriguing connection between schizophrenia and autism. “If we hadn’t known that these were two different diseases, and had put all the mutations into a single analysis, it would have come up with very similar networks,” said the study’s senior author, Dennis Vitkup, PhD, associate professor in the Department of Biomedical Informatics, the Center for Computational Biology and Bioinformatics, and the Columbia Initiative in Systems Biology at Columbia University Medical Center. “It shows how closely the autism and schizophrenia genetic networks are intertwined,” he added.

Notice again the disease model. And, because psychiatrists have decreed that autism and schizophrenia are two different things, the scientists are trying to prove that, and are surprised when they can’t find a real distinction. So they say they are “intertwined” rather than identical. More motivated reasoning. I don’t want to get sidetracked into a discussion of this issue, and I’m sure I’ll have more to say about it, in greater detail, in future posts.

The Atlantic article contains some of the usual false sterotypes around autism, including the reference in the “indistinguishable” quote above to “odd, repetitive behavior.” These behaviors are not at all odd to the person engaging in them, but are soothing behaviors that ease anxiety. Likewise, it is said that symptoms “include social withdrawal” but that could more accurately written as “social exclusion” because most autistic people I talk with wish, like me, that they could have been more accepted by their peers during school years.

There is also the rather strange statement that “Both conditions [autism and schizophrenia] are also sometimes linked with extremely high intelligence…” Sometimes? Sure. About as often as in the neurotypical population. I’m not sure what “linked” means in this sentence, but there is no correlation between any measure of intelligence (either IQ or functional adaptive ability) and the likelihood of being diagnosed with autism.

The list goes on. There is mention of the “paranoid fears and delusions” associated with schizophrenia. In my experience, these tendencies are also very common (if not universal) features of autism. It may be that only when they become so pronounced as to be obviously impairing a person’s ability to get by successfully in the world that they are labeled as schizophrenia.

And then we have the empathy thing.

While autistic people sometimes have difficulty understanding the thoughts and intentions of others — an ability sometimes known as cognitive empathy or theory of mind– research finds that they are not impaired in “emotional empathy” or the ability to share the pain and pleasure of others. In fact, some autistic people have such high levels of emotional empathy that their distress about other people’s pain prevents them from actually being able to reach out and help.

Hurray! Some progress has been made. The acknowledgement that we have emotional empathy is a fairly recent development, despite the fact that autistic people have been saying that for years. But it seems we still have some work to do to explain to the neurotypicals who run the world that our theory of mind works just fine, thank you very much.

I think the reason there is so much misunderstanding about this issue is that the human mind is programmed with the default assumption that another person’s brain works the way ours does. Cognitive empathy is not mind-reading. It’s a thought process (some of it aided by mirror neurons and other brain devices) about “what would I be thinking/feeling/intending if I were exhibiting those same actions (including speech, facial expressions, and other cues)?” Because, in some important ways, autistic brains process information in a different way from neurotypical brains, people of different brain types will not naturally understand each other. I may not understand what a neurotypical person means by a given statement, because it would mean something different if I said it.

But cognitive empathy is a skill that can be learned. I work with many couples in a support group setting, where one partner is neurotypical and the other partner is neuroexceptional (most commonly with an Asperger’s diagnosis). The one thing that I’ve found that makes the most difference in improving communication within such a relationship is to develop an understanding on both sides of where the important differences are in ways of thinking about, perceiving, and describing the world.

Out of the sadness of the Newtown tragedy, I am hoping that (at least) two things will emerge. One is a public outcry to reduce the availability of the weapons that make possible such large-scale crimes. The other is a better public understanding of autistic people and those with closely-related profiles.

The article I have critiqued here is a supportive one that would not have appeared even a few years ago. Understanding is changing, for the better. We still have a long way to go. More and more autistic people are speaking up, as witnessed by this post and the many that I have linked to. We don’t have all the answers, either, and we can make make mistakes. But we do know what it is like to be autistic, and we know how we think and feel. Out of tragedy may there come love and understanding.