One fact that is not very well known to the general population but pretty well known to people in the international autism world is that autism is highly stigmatized in South Korea, and that families will do just about anything to avoid a diagnosis of autism, because it is so shameful. In my experience attending talks about international autism services and in my research, I have found that this fact is cited more than almost any other in the case for better international autism services. In fact, if you google “autism” and “stigma” and “South Korea” you find literally dozens of articles that talk about the high social stigma of autism in South Korea. Which is actually kind of remarkable, given that it’s really HARD to find accurate or interesting information about autism in other countries just by googling (trust me, I’ve tried.)

So, what’s in a fact? Well, the origin of the interest in South Korea started with this book by Roy Richard Grinker. A father of a daughter with autism by fate and an anthropologist by training, Grinker writes about all things autism and culture. Grinker is a gift to the autism world, because he is really good at what he does. He’s an incredible anthropologist, who spent a lot of years writing about other cultures before he decided to make the personal professional and start studying autism. And study, he did. He spent time in South Korea, he did a lot of interviews. And what he found was this– some parents believe that having a child with a diagnosis of autism means that the family is genetically compromised.

Autism existing in a child means that all members of the family are less eligible for marriage, more likely the objects of discrimination, and more likely to be excluded from important social circles. Families report that they might even struggle to sell their apartment or property, because people don’t want to buy a house that someone with autism has lived in. One mother he interviewed said, “It’s like I’m always in the middle of winter.” He also documented that parents often prefer and try to aquire a diagnosis of Reactive Attachment Disorder (a rare  disorder of severe, often irreparable childhood pathology caused by significant abuse or neglect by caregivers. It’s very rare often quite severe, marked by a complete lack of empathy bordering on sociopathy. The only child I’ve ever seen with RAD had to be locked in her room at night to prevent her from murdering her siblings.). This is NOT a good disorder to have. Yet parents in south Korea prefer it sometimes, because it means the mother can take the blame for poor care, as opposed to it being genetically linked to the entire family.

All of this information is difficult to read. It would lead one to believe that there aren’t that many kids diagnosed with autism in South Korea. But here’s where it gets really interesting– a very rigorous study of epidemiology in South Korea suggested an unusually high prevalence– as many as 1 in 38 children with a diagnosis of autism. The study was a little different, though. A lot prevalence studies use record review– counting the number of children who already have diagnosis of autism educationally or medically. This study though, literally screened massive numbers of children, and then gave them a diagnostic evaluation if they failed the screener. They determined the child’s diagnosis as part of the study. This is one of the most rigorous ways of guaranteeing that a diagnosis is accurate, essentially disproving (at least in this specific case) that the actual rate of autism is not as high as prevalence studies reflect, because some children diagnosed with autism don’t actually have autism. Not surprisingly, the majority of the children they diagnosed during this study did not have a previous diagnosis of autism, given that it’s generally avoided in South Korea. The majority of parents in this study did not receive the diagnosis well.

The the only remaining question is why? What’s happening in South Korea that leads to a higher prevalence rate than anywhere else? Especially when the diagnosis is so reviled? Unfortunately, I just don’t know. I feel like as the research and training coordinator, I should have an answer for this, but I don’t. Some have suggested that this study shows that autism is under diagnosed everywhere, and the prevalence is actually higher than we think. Others think it may be because the diagnostic tools in the study are Western societal tools, which don’t take into account culture. For example, a child might get docked for having “poor” eye contact, even though direct eye contact is generally discouraged for children in South Korea. There are lots of possibilities. Unfortunately, as with a lot of autism research, it leaves more questions than it does answers. It seems likely though, that the international autism community will be looking for South Korea for the next several years to see what happens. Stay tuned….

Emily Johnson

Research and Training Coordinator