Monday, April 23, 2007

Unconfirmed Diagnosis in Virginia Tech Tragedy; Related Notes on Autism in Korea

In the landslide of media coverage of the Virginia Tech tragedy in which a gunman murdered 32 people and himself on April 16, there was one line that stood out to parents of kids with autism spectrum disorders: the killer in the case, Seung-hui Cho, had been diagnosed with autism, according to a great aunt.

The Associated Press reported that Cho's great aunt said the family had received the diagnosis sometime after emigrating to the United States in 1992. The news service added in a follow-up report that the great aunt "said the family was told in the U.S. that Cho suffered from autism -- but no records show such a diagnosis." (You can read the dispatches here, via The Age newspaper in Australia, and the later story here via Washingtonpost.com.) A long article in the April 22 edition of The New York Times entitled "Before Deadly Rage, a Life Consumed By a Troubling Silence," made much of Cho's lack of speech, his non-existent or extremely awkward social interactions, and a court's declaration of his mental illness, but the report did not mention autism. (If you have seen more definitive information about this case, please post a comment at the end of this article.)

So what are we to make of this?

The facts of the case are important. One could deduce a diagnosis from assembled pieces of media coverage and compare them to the Diagnostic and Statistical Manual of Mental Disorders (the American Psychiatric Association reference which describes autism spectrum diagnosis criteria). But without medical records or a doctor's testimony one would have an incomplete picture of Cho's case.

That uncertainty does nothing for people like parents who already are worried about the negative associations that an autism connection would have on their children. In this community, there are persistent concerns about a negative stigma. There's already an ongoing fight to gain support from society at large, already a struggle for understanding and acceptance. That's why AutismLink.com, an advocacy group and service center in Pittsburgh, issued a statement urging the public not to blame Cho's actions on autism. It is why, in the wake of a murder at a Boston area high school in January, the Asperger's Association of New England urged the public to avoid generating a sweeping negative stereotype about people with Asperger's (for background on that case, see here.)

In an effort to understand this dynamic swirling around the Virginia Tech tragedy, I wrote to Roy Richard Grinker, professor of anthropology and the human sciences at the George Washington University. He has a daughter with autism and he has studied how different societies -- including South Korea -- are dealing with autism. He published Unstrange Minds: Remapping the World of Autism (New York: Basic Books, 2007) and created an associated website at Unstrange.com.

I am going to post Professor Grinker's note in full below, which emphasizes that he is not a doctor and so is not qualified to talk about medical diagnoses. But as a matter of the societies in which Cho grew up, Grinker notes that: "It is unlikely that he would have been diagnosed in Korea. In the U.S. it is also unlikely, if only because Korean-Americans are on the whole very reluctant to seek mental health care (since it is just so stigmatizing). Doctors I've interviewed (including Korean-American doctors) tell me that by the time a Korean person gets to a mental health professional that person may be acutely mentally ill."

Why is that unlikely? Professor Grinker's note below explains more. It's long, but if you read it you get to understand how the ever-changing societies in which we live influence how that society views a disability like autism. Here's the note:

In my experiences in Korea, South Africa, and India, autism, when defined adequately, has been less stigmatizing than the other categories that are more commonly used, like mental retardation, possession by a demon, or, in India, paagol (Hindi), "mad." But illness categories are meaningful only if there is something one can do with them; thus, for many adults today in the U.S. who require public assistance it makes little sense to carry an autism diagnosis in states where services to adults with autism are provided only under the category of mental retardation. Pediatricians and psychiatrists in India, for example, put it quite simply: “What is the benefit to my patients of an autism diagnosis?” Since autism is not well understood in India, and there are few government services for the category of “autism,” they see little point in making the diagnosis. Instead, they use a category everyone knows – mental retardation – even if it is inaccurate. As one physician in New Delhi told me, “The treatments in India for someone with mental retardation and autism are identical.”

In Korea the situation is a bit more complicated. Autism is less stigmatizing than mental retardation but for autistic kids without mental retardation, autism is more stigmatizing for the family than the preferred diagnosis, Reactive Attachment Disorder (which, in cases where there is no demonstrable pathological care-taking environment, can be construed as a version of the refrigerator mother). Here is why autism is more difficult a category for the family as a whole.

In Korea, children American clinicians might diagnose with autism are often diagnosed with reactive attachment disorder (RAD). RAD is sometimes described pejoratively as “lack of love” (aejong kyolpip), a term that, for Koreans, conjures images of orphans craving affection and care. In Korea, RAD is thought to be a condition mimicking autism, caused by a mother’s absence of attachment to her son (this is the Korean version of the “refrigerator mother”). In fact, some clinicians in Korea even prefer to drop the word “reactive,” because, from their perspective, that word identifies the pathology in the child rather than the parent. By calling RAD simply “attachment disorder” (aechak changae), the blame can be more clearly placed on the mother.

RAD is a diagnosis that many parents prefer, even though it directly indicts the mother as a pathological caretaker. First, unlike autism, RAD or lack of love can be ameliorated by giving love; it’s not a permanent condition. An autism diagnosis, however, is seen as a statement that your child has no future. Autism, at least in Korea, is widely considered to be untreatable and many parents who try various therapies, like speech therapy, vitamin regimens, or herbal medicines, give up after a while if their child is not cured. The Seoul-based psychiatrist Dong-Ho Song, who is one of the best trained and busiest child psychiatrists in Seoul, and who is an important member of our Autism Speaks-funded project, had a patient who had been diagnosed with RAD first at the age 18 months and then subsequently by several other doctors throughout his early childhood. He was almost eleven when he came to Dr. Song and received his first diagnosis of autism.

Second, RAD or lack of love is not a genetic condition so it doesn’t impugn the family and harm family members’ marriage prospects in the same way a genetic disease might. This fear of autism as a genetic disorder is found in India and other countries as well, where parents fear that they will be marginalized from the social networks they feel they are entitled to. Thus, while RAD may stigmatize the mother, autism stigmatizes the whole family, past, present, and future.

Third, and perhaps most importantly, the [RAD] diagnosis makes sense to Koreans. Korea has been undergoing rapid social change for the last fifty years, emerging from the total devastation of the Korean War to becoming one of the richest countries in the world. Conservatism and resistance always accompany social change, and women make easy targets. Mothers are entering the workforce in unparalleled numbers, and Korean sociologists and child health experts are responding. They argue that women no longer know how to care for children. They leave their children with grandmothers or nannies and thus cannot bond with their children. Psychologists and psychiatrists thus ask: “Is it any wonder, then, that the children of working mothers have language and social deficits?”

The result is that many Korean parents are unwilling to put their child at risk for being diagnosed “incorrectly” with autism when they are already comfortable with their child’s existing diagnosis of RAD.

Now, as for the shooter at VTECH, Cho Seung-Hui, first, I am not a clinician, as you know. But second, as far as I know from reading the press, there is not much information on him as a child. It is unlikely he would have been diagnosed in Korea. In the U.S. it is also unlikely, if only because Korean-Americans are on the whole very reluctant to seek mental health care (since it is just so stigmatizing). Doctors I've interviewed (including Korean-American doctors) tell me that by the time someone gets to a mental health professional that person may be acutely mentally ill. Again, I am not a clinician, but I suppose it's possible that some clinician somewhere could have at one time used the word autistic as an adjective to refer to -- remember again that I am not a clinician -- the flat affect and introverted personality of someone who would grow up to have schizophrenia. Remember that in the DSM I and DSM II "autism" was mentioned in the criteria for childhood onset schizophrenia. You can see the criteria on my website at unstrange.com

DSM refers to the Diagnostic and Statistical Manual of Mental Disorders from the American Psychiatric Association. Its criteria for diagnosing autism originated with a childhood schizophrenia and has evolved over the years. You can see the link to the criteria to which Professor Grinker refers by clicking here.

3 comments:

Mel said...

I found this very interesting as I have been concerned with the recent violent acts of people who have (or are perceived to have) autism. It promotes an additional stigma, that all autistic children/adults are violent. I've already heard of some movements to restrict mainstreaming to "protect the kids who are there to learn." It's quite scary. It also seems obvious to me that Cho, even if he had autism, had a few other mental health issues as well. The sociological comments on Korean society are also interesting.

BlueNight said...

"protect the kids who are there to learn"?!? Are people actually SAYING this?

As an adult with Asperger's who came up through the public school system, I feel insulted. When I was in school, I was interested in nothing BUT learning! I literally couldn't comprehend classmates who didn't want to learn!

In fact, that urge to learn was the reason I always had problems with homework and schoolwork. Doing the paperwork wasn't learning, reading from textbooks was!

Now I know better. The paperwork and homework are to help me practice the skill of applying the concept. The children are supposed to form a social network, and practice social skills. Knowing these two concepts alone would have immensely helped me through my entire schooling.

But I was there to learn. My problems showed up when people prevented me from learning.

Michael Goldberg said...

You raise an excellent point, that kids on the autism spectrum have a great opportunity to learn from other kids about social interactions. Thank you for writing. Michael

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