Autism, Ethnicity, Race
May 22, 2006 by Kristina Chew, PhD
Filed under Health
自閉症, zi bi zheng (formed of the three words “self,” shut/close,” “obstruction”) is the Mandarin for “autism,” with the suggestion that it is a condition in which the self is withdrawn, shut and closed up in itself.
Autism is commonly said to “cut across all lines of race, class, and ethnicity” (from First Signs: Autism Spectrum Disorders). Yet Dr. Arthur Caplan of the Center for Bioethics at the University of Pennsylvania notes in passing in his article Would you have allowed Bill Gates to be born?” that “autism appears in certain ethnic groups more than others.”
My own background is ethnic Chinese; my husband’s is Irish. I have been wondering about Dr. Caplan’s statement. Might higher numbers of autism diagnoses in children from “certain ethnic groups” be due to certain of those ethnic groups (in the US) being more likely to take a child to see a medical professional if developmental milestones do not arise? In the documentary Refrigerator Mothers, an African-American mother is told that her son cannot have autism because he is not white.
I will be curious about the results of this study on Epidemiologic Research on Autism in China which notes that
Autism Spectrum Disorder (ASD) is a severe, brain-based, developmental disability whose prevalence appears to be on the rise in the developed countries but whose prevalence in China is largely unknown. Launching research efforts in populations where the genetic background and exposure distributions may differ from populations already studied should hasten progress toward revealing important heritable and nonheritable risk factors.
Some of the variations may also stem from different default interpersonal/communication styles in different groups, leading to different expectations of social/language development. This would primarily affect kids on the “mild” end of the spectrum (which is probably where most of the kids are). For example, a certain pattern of social development might be regarded as problematic in a culture that strongly values gregariousness (such as US “mainstream” culture) but not in one where people are expected to be more reserved. In some cultures, making eye contact is seen as essential; in others, it’s seen as something that should be done only in very limited circumstances. If a kid has a hard time interacting informally with strangers of his own age, that’s more likely to count as “social impairment” if he comes from a background where strangers are expected to interact informally (e.g. use first names) than if he comes from one where informal interaction is reserved for those one is really close to.
It’s sometimes been said that Asperger’s is “more severe” in girls than in boys. But how much of that is a true neurological difference, and how much of it simply comes from the fact that boys aren’t under social pressure to be “ladylike” (other-directed and relationship-oriented) or to wear their emotions on their sleeves?
There are supposed to be autistic/TD differences in pain tolerance, but pain-related behaviors are really variable between cultures. There are cultures in which the “normal” reaction to a very minor injury would be considered histrionic by most Americans, and cultures in which the “normal” reaction to kidney-stone pain would be considered extraordinarily stoic.
The point is that nearly all the diagnostic criteria for autism-spectrum conditions are expressed relative to certain expectations and that many of those expectations have significant cultural content.
It may seem a stereotype, but the Chinese American culture that I grew up in valued silence in ways that my husband’s Irish American family did not. Indeed, I had some idea of this at the back of my mind when Charlie was approaching his 1st birthday and did not have any language.
Have you read Anne Fadiman’s The Spirit Catches You and You Fall Down? It is about a Hmong girl who has epilepsy–as her American doctors call it–or “the spirit catches you and you fall down”–what her Homng family refers to her “disorder” as. And their approach to treating (vs. curing) it is different indeed, and the culture leads to serious tragedy.
Before the 1990s, the prevalence of Kanner autism in the U.S. and Europe stood pretty much at 4-5 in 10,000. The prevalence in Japan in 3 out of 4 studies I’ve looked at was a bit over 10 in 10,000. I have wondered if these differences were real, or if they were due to evaluation differences. Also, the mean score of controls in the Japanese version of the AQ test is 18.5 (20.7 for University students). In the UK, the mean score of controls was 16.4.
Just a bit of speculation for curious people
Thanks, Joseph—a book is coming out later this year that will be an epiemiological study of autism in Korea and South Africa. I am curious to see how autism is diagnosed, understood, etc., in those cultures.
I’m Japanese American and also have AS. When I went to see one psychiatrist, he basically told me Asians just naturally have some of the symptoms of AS because of the way we are raised and that I don’t really have it. I got really angry and left but it made me think. There are many similarities between the so called symptoms of AS and the stereotypes some people have of Asians. Is this just coincidence?
Paul—after sighing over how that psychiatrist could say that!—I have sometimes thought the same, in regard to the stereotypic traits of Asians being less emotional, less emotionally demonstrative, talented at math…. I think the Johns Hopkins study might provide some interesting findings in terms of the population in China. But, more of all, those notions of autism and being (for instance) “less emotional” seem to stem from an outdated understanding of autism as a psychological disorder.
I don’t know if that coheres with your experience?
I don’t have the stats. yet to back it up however, I don’t think there is any getting away from it…there is a vast disproportion of Chinese and maybe Korean kids, among the developmentally disabled population, that are autistic. I saw this coming many years ago.
Informal questions I have asked support this. For example…ask a Chinese caseworker within the California Regional Center system what percentage of her caseload of children are autistic…ask the same question of say someone who has primarily Anglos…ain’t no doubt.
Why?
I don’t know why.
Kristina-
Again…contact some of the regional centers in Southern California that have large Asian populations…they likely can release stats. to you…
It will support what I am seeing and have been seeing for years…Proportionately…there are far more Chinese, Korean and, I think, Vietnamese kids with autism as compared to other ethnic or racial groups…I think you will find the stats. overwhelming.
Thanks, Howard. I think the understanding of autism in China, South Korea, North Korea, Vietnam, and other Asian countries may not necessarily be the same as it is in the United States.
don’t think we are talking about the same thing here…
I am saying…within the Asian community, at least in Southern
California…autism IS occurring at a much higher rate than it is within
other racical/ethnic groups.
I could probably even get you the data.
Where are you from?
What are the stats for blacks and Africans? My own investigation of autism-prevalence in the US seems to give Afroamericans at most 1/6th the prevalence of other ethnic groups in the US. There isn’t any statistically significant difference for Asians or Amerindians. Link: http://www.rdos.net/aspeval/race7.htm
why are hispanic children misdiagnosised when
it comes to autism?
Why are hispanic children misdiagnosis when it comes to autism?
I found this site looking to see if there was any information about increased incidence of autism among persons of Asian descent. I am a children’s therapist and it seems to me that Autism is found at a higher frequency among those of Asian descent. I’m also wondering if there is any difference regarding age of onset in different racial groups.