Here in the US, when people hear that autism was referred to as "childhood schizophrenia" in the first edition of the DSM (1952), they're often flabbergasted to hear autism linked to schizophrenia. Today we talk about autism as a developmental disorder/disability; as a neurodevelopmental disability. Wary of the "refrigerator mother" theory of autism, we're careful not to speak of it as a psychological or psychogenic disorder, and certainly not as a mental illness.
But where you're from shapes your understanding of autism. Unstrange Minds: Remapping the World of Autism (2007) by anthropologist Roy Richard Grinker examined differing conceptions of autism both around the world (in South Korea, India, and South Africa) and at different times in the past century in the US. An examination of the changing diagnostic criteria for autism provides a capsule history of how we in the West have changed in understanding autism; the argument can be made that the broadening of the diagnostic criteria for autism has played a significant role in the rising prevalence of autism (now 1 in 100 in the US). Reports on the DSM-V have revealed plans to "collapse the spectrum" by using a single diagnosis for the disorders currently referred to as Autism, PDD-NOS and Asperger disorder.
An article in yesterday's New York Times magazine examines how, around the world, different cultures perceive and understand psychiatric illness in different ways---in particular, not according to medical and biological models---and how the "American way" of understanding mental illness is spreading around the globe. Autism is not specifically referred to (anorexia, depression, and schizophrenia are some of the disorders discussed) but much of what Ethan Watters writes is relevant:
This unnerving possibility springs from recent research by a loose group of anthropologists and cross-cultural psychiatrists. Swimming against the biomedical currents of the time, they have argued that mental illnesses are not discrete entities like the polio virus with their own natural histories. These researchers have amassed an impressive body of evidence suggesting that mental illnesses have never been the same the world over (either in prevalence or in form) but are inevitably sparked and shaped by the ethos of particular times and places. In some Southeast Asian cultures, men have been known to experience what is called amok, an episode of murderous rage followed by amnesia; men in the region also suffer from koro, which is characterized by the debilitating certainty that their genitals are retracting into their bodies. Across the fertile crescent of the Middle East there is zar, a condition related to spirit-possession beliefs that brings forth dissociative episodes of laughing, shouting and singing.For the past generation, "we in the West have aggressively spread our modern knowledge of mental illness around the world......... in the name of science, believing that our approaches reveal the biological basis of psychic suffering and dispel prescientific myths and harmful stigma." But Watters notes that referring to psychiatric illness or conditions as "brain disease" or a "chemical imbalance" or as "genetic/inherited" does not necessarily lessen the stigma:
Unfortunately, at the same time that Western mental-health professionals have been convincing the world to think and talk about mental illnesses in biomedical terms, we have been simultaneously losing the war against stigma at home and abroad. Studies of attitudes in the United States from 1950 to 1996 have shown that the perception of dangerousness surrounding people with schizophrenia has steadily increased over this time. Similarly, a study in Germany found that the public’s desire to maintain distance from those with a diagnosis of schizophrenia increased from 1990 to 2001. ........It turns out that those who adopted biomedical/genetic beliefs about mental disorders were the same people who wanted less contact with the mentally ill and thought of them as more dangerous and unpredictable. This unfortunate relationship has popped up in numerous studies around the world. In a study conducted in Turkey, for example, those who labeled schizophrenic behavior as akil hastaligi (illness of the brain or reasoning abilities) were more inclined to assert that schizophrenics were aggressive and should not live freely in the community than those who saw the disorder as ruhsal hastagi (a disorder of the spiritual or inner self).And Watters---whose Crazy Like Us: The Globalization of the American Psyche will be published later this month---points out that "people with schizophrenia in developing countries appear to fare better over time than those living in industrialized nations."
I'm third-generation Chinese American. I talk about autism as a neurodevelopmental disability and see autism, in Charlie's case, as genetic. I am quite Americanized, to the point that some more recent immigrants from China have balked in disbelief when told that I'm Chinese. I (and my parents) were born in the US (in California, to be precise). Only my late Ngin-Ngin, my father's mother, lived in Oakland Chinatown for all of her life, as everyone else moved to the Bay Area suburbs. But a strong sense of Chinese American identity runs through my family.
For all my "Western understanding" and belief in science, the scientific method, and scientific evidence; for all my being so "Westernized" that I teach and translate ancient Greek and Latin, the foundational languages of Western culture, and know little Chinese (smatterings of Cantonese and Mandarin)---for all this, in raising my beloved boy, whose challenges seem at times to grow by the day, whose life trajectory is so different from that of ye typical Asian American model minority child---something of Chinese tradition, Chinese culture, an inflexibly deep-running sense of duty and obligation to the family and to taking care of those in it, persists.
I can't express this sense as articulately as Watters details how "mental health American-style" is being spread around the globe. Maybe it's because my family and my parents in particular are Chinese, are Asian, but their devotion to Charlie---as was their devotion to their own children---runs deep and unshakeable, and I feel they've passed this on to me (and I'll denote Jim honorary Chinese, as he's just as devoted). Charlie is our child and, while we're not always sure we're doing the right thing to help him, we know we have to keep trying, day in and day out.
After a very difficult holiday break, Charlie settled back well in to school, but has continued to struggle mightily at home. Sunday we made another trip to the ocean (to a different beach on the Jersey shore) and Charlie sprang from the car to see the water, and ran over the cold sand towards the waves. Coming back home, he got tremendously upset---severe neurological storm, is all I can say. He was ok when we got home; he had had also had a tough Saturday evening and a frazzled night so we weren't entirely surprised. A bad night and there's that lag, as if whatever emotions Charlie has been feeling are expressed like the aftershocks of an earthquake. He came home and slept from 6 - 8.30pm. Woke up in good spirits and hung around with us till 11pm when he voluntarily took himself back to bed.
For most of the day, Charlie's face was sad and worn. Jim and I talked about thinking he may well be depressed; about how the reality of where he's now going to school is really setting in. We do think that Charlie likes the Big Autism Center. But he's surely noticed that he's now in a separate school for kids on the spectrum, that he's no longer with his classmates of three years. Whatever our frustrations with his old public middle school autism program, Charlie did want to go to school, even when he was having the most trouble there. I am very sure that he misses it and has mixed feelings about this and, who knows, about the new school---and, too, about us, his parents who made these decisions and changes for him.
We try to talk a little about all this to Charlie. While, in the heat of the moment, it's not easy to think about everything that Charlie's dealing with, we're determined to go out of our way to be hyper-sensitive to a fault, to understand why our boy seems sad, and why this sadness (and confusion, and frustration) manifests itself the way it does, via Charlie's body.In his article, Watters notes:
Many traditional cultures regard the self in different terms — as inseparable from your role in your kinship group, intertwined with the story of your ancestry and permeable to the spirit world. What [University of Puget Soundanthropologist Juli McGruder] found in Zanzibar [where she studied studying families of schizophrenics for year] was that families often drew strength from this more connected and less isolating idea of human nature.First and foremost, I know that Charlie is Jim's and my son, that he's part of our family. While we missed seeing my many relatives in California this past Christmas, they all sent Charlie gifts and made sure we knew that we were all missed, and that they hoped to see us soon. While Charlie has not grown up with my first cousins' children, he's always considered "one of the great-grandchildren" of my late Ngin-Ngin. We named Charlie for my grandfather Charlie Chew, my father's beloved father, my Yeh Yeh. Charlie struggles are legion but it's understood that he's not to be isolated from the family, that he's bound to the family in an inextricable way; that he's one of us.
And that we're never letting go of him.