Thursday, September 8, 2011

City Mouse, Country Mouse, Autistic Mouse

There's one more thing from Unstrange Minds that stuck in my head, that I didn't think to include in this post and which probably deserves its own post anyway, given how much stuff was already in the other post.

Anyway, in the chapter on autism in South Korea, Roy Richard Grinker alludes to something I've seen mentioned before, and am curious about.

While describing differences between rural South Korean villages and the capital city of Seoul in how these communities treat their autistic members, Grinker mentions some research conducted by the World Health Organization comparing how well people with mental illnesses fare in developed vs. developing countries:

An agricultural area often belittled by Koreans and long neglected by the government, Cholla-do remains the most underdeveloped region in one of the richest countries in the world. Cholla residents are familiar with discrimination and adversity and find it hard to improve their class and social status. They consider it a great success to make one's career in Seoul, where more than 25 percent of South Korea's 44 million people now live.
Still, after asking a few questions here and there (Are there any children who don't speak well? Are there children here with brain disorders?), I found a sixteen-year-old boy and a nine-year-old girl in a mountainous county. Everyone seemed to know about them. And when I talked to the barber and the local grocery-store owner about them, there was no hint of discomfort or pity. Peter, as his mother wanted him to be called, was good with bicycles and served as a messenger for two villages, delivering letters and packages with a broad smile. He saw a doctor once every two months and was medicated with a small dose of an antipsychotic drug that calmed his anxiety and some of his repetitive movements. The girl, Soo-Rin, was in the village with her single mother only on weekends because she attended a special school for children with Down syndrome, cerebral palsy, and mental retardation. But everyone knew her too. Her room at home was lovely, pink with lace curtains, stuffed animals, and Disney characters. Her mother said she takes a medication at school to help her pay attention, but she didn't know what it was called. In these villages, you can find proof of something the World Health Organization has been arguing for years: People with mental disorders do better over time in remote, nonindustrial societies than in urban, industrial ones.

I'd read about that research before, in Robert Whitaker's book Anatomy of an Epidemic; in that book, he argues that the reason the people in developing countries are more likely to recover from acute mental illnesses, and don't become chronically mentally ill as often as people in developed countries, is because people in developing countries often don't have access to psychiatric medication, which Whitaker argues actually worsen a person's condition over time.

Grinker lists an earlier book by Whitaker --- Mad in America --- in his bibliography, along with a book-length follow-up to this study (full text here), but he is not making Whitaker's argument here. Instead, he thinks the people in the rural villages are more accepting than the people in the cities:

This is not to say that life for the disabled is easy in the villages --- even someone with a mild speech impediment, who is otherwise normal, will have just as much trouble finding a spouse as an urban dweller with the same problem. And parents can be just as devastated. One man confessed to me that in his despair he once took his young autistic son high up in the mountains, intending to slit his throat, but couldn't bring himself to do it. But for most parents of disabled children, life in the rich city of Seoul is more stressful than in the more humble village. One of the paradoxes of rural life is that people in the villages tend to be relatively accepting of diversity. Little remains secret, and there seems to be a place for everyone. In the rural areas, people assume that things would be much better for their children in the city. But in the city, in the sprawling, indistinguishable apartment complexes of Seoul, most people do not know their neighbors, even though they watch them as closely as they can. The pressures to measure up can seem overwhelming, and families try to keep anything that might reflect badly on their status hidden from view. The moment you bring your disabled child outside in this densely populated city is the moment you are confronted by strangers, people who will watch and judge you.
Later on, he says something that would seem to rule out Whitaker's non-drug hypothesis: the children he met in the rural villages were taking psychiatric medications, while very few of the children he met in Seoul were taking any.

He sees this as symptomatic of the prevailing viewpoint in Seoul that autism is basically a death sentence; if nothing can make an autistic child non-autistic, what's the point of drugs or therapies? It all just costs money, and with drugs there's also the matter of side effects to consider.

(I actually thought his interviewees' concern about the side effects of psychotropic drugs was sensible; I thought Grinker in this passage was being way too uncritical of US psychiatrists' willingness to prescribe these drugs to children when so little is known about their long-term or developmental effects. I think his point about the all-or-nothing mentality is a valid one --- and that mentality is certainly not restricted to South Korea! --- but I don't share his faith that drugs always lead to better quality of life. Indeed, often their use is a symptom of the same societal rigidity that he blames for making urban life so much harder for autistic people to participate in than rural life.)

Anyway, his mention of those WHO studies reminded me that I had wanted to read them (and there are still more follow-ups, meta-analyses and similar studies from more recent years, too), and post about them.


nominatissima said...

I remember that too.
For me as an autistic person, city living is more stressful because there are so many more variables going on. In a rural area, everything's a lot less chaotic, so it's easy to remember and compartmentalize that information. I can't remember if RRG said anything about that, but when I think about rural autistics vs. city autistics, I often wonder if there are others who feel the way I do.

Lindsay said...

I don't think he did say anything about that; he didn't write much from the perspective of the autistic people in the book except for his own daughter. He was looking less at how the autistic person coped with things and more at how the community coped with the autistic person being in it, I think.

I definitely feel the same way about being in the country, though; have written about that before, in a post about my stay at a rural intentional community in Tennessee. I found I was unexpectedly not bothered by the proximity of lots of people, which would have overloaded me quickly in an urban environment.

I do know of at least one autistic blogger who has a marked preference for cities, though. And there are definitely things I like about cities, too --- access to all sorts of things, like libraries, concerts (I love music), art fairs, niche shopping, restaurants etc. is fairly important to me, and as I don't drive I need things to be *really* close for them to count as "accessible".

nominatissima said...

The thing about rural areas is, give or take depending on the area, the lack of sensory overload can't really compensate with the lack of access to autism-friendly healthcare, and the access to good public transportation. My best compromise has been Victoria, which is big enough to have nice things, but is pretty quiet during tourist season.

Anonymous said...

Interesting. Unstrange Minds has been another on my (mushrooming!) to-read list for a while now.

My own experience is complicated by significant cultural differences being involved too. But, I did find it much less overwhelming, living in a smallish town in a rural area than in the inner burbs of London. The background noise and high population density are much harder on my senses. (She says as the upstairs neighbor is blaring his stereo again, while car and bus noise drifts in the open window...) I definitely noticed operating a lot further from overload regularly when I was back home, and was better able to deal with stressful situations. Readier access to go and decompress some in the woods would be nice, and would be less of a problem if I were driving here.

Interesting, the differences between nominatissima's experiences and my own regarding autism-friendly health care and transportation. But, NHS services are rated low in general in terms of patient-centered care (I would agree, from my limited experience), which makes a big difference. And I was previously living in an area pretty well saturated with health care availability in general, unlike many rural areas. Public transport availability is a mixed blessing for me, since while it's great to know it's available, I don't find it very accessible (especially as crowded as it tends to be locally). By the time I have, say, taken the bus to go grocery shopping, dealing with the store itself is much harder. That's part of one official strategy now, apparently, but I have no idea how or if they would make it more accessible--especially with disabled people taking the brunt of funding cuts.

Of course, that experience is based on having been driving. Living in a more rural area while unable to drive, any public transport would be helpful!