Basically there are more children with autism than we think even in the United States - the true rate of autism is likely higher than previously thought with many children on the autistic spectrum flying under the radar, undetected in their schools and homes. If we'd only look for them more closely they would reveal their disabilities and deficits to us:
From the get-go we had the feeling that we would find a higher prevalence than other studies because we were looking at an understudied population: children in regular schools,” said the lead researcher, Dr. Young-Shin Kim, a child psychiatrist and epidemiologist at the Yale Child Study Center. Study in Korea Puts Autism’s Prevalence at 2.6%, Surprising Experts, New York Times
"If researchers went into the grade schools in their communities and looked there, we think they would come up with numbers similar to those we are reporting," (lead researcher Bennett L. Leventhal, MD, of the NYU Child Study Center) said at the news conference. "This means there are uncounted children who are not in the services system." Study: Autism May Be More Common Than Thought, WebMDYou didn't think Autism Speaks, the advocacy group that partially funded the research was gonna pass up this opportunity?
"These findings suggest that ASD is under-diagnosed and under-reported and that rigorous screening and comprehensive population studies may be necessary to produce accurate ASD prevalence estimates," stated Autism Speaks Chief Science Officer Geraldine Dawson, Ph.D. " New study reveals autism prevalence in South Korea estimated to be 2.6 percent or 1 in 38 children, Eureka AlertsJust how many under-diagnosed and under-reported cases of autism are we talking?
Lots of autism cases popped up in the heretofore undiagnosed kiddies, meaning they weren't diagnosed prior to the researchers poking around their business.
It would seem a portion of these students were functioning well enough in daily life to prevent any psychiatric labels. Surely some were not doing well and for whatever reason (parental lack of awareness, stressful home life, overcrowded schools, social stigma etc.) were never hauled into the school psychologist. Apparently there is lower awareness and more stigma associated with autism in South Korea.
Now here's the amazing part.
MOST cases of autism went undiagnosed! Most cases! Two-thirds.
Two-thirds of the children classified in the study as autistic were not diagnosed before the researchers started asking questions and assessing their behaviors. Thus the mental health professionals working with the researchers decided they were autistic.
It's hard to understand how so many children would go undetected - especially here in the US. Maybe in some areas far from a bevy of health professionals and autism awareness bumper stickers in school car lines but here in my suburban existence it seems unlikely most or even many kids with autism go unrecognized. It's even odder to think about autistic behavior in older kids going unnoticed. Maybe a kindergartener even first grader but a 12-year old seems unusual.
True, I have little idea what life in South Korea is like for a kid struggling with the demands of social interaction. The typical school day lasts for 12 hours. The schools stress academics and rote learning over the more social aspects of development. The researchers studying the autism rate have suggested the more socially-impaired students "passed" as they weren't forced to communicate or interact in a less-structured manner with their peers while in the classroom, unlike say their more touchy-feely American counter parts practicing anti-bullying role playing and writing letters to congresspersons advocating more fruits and vegetables in the cafeteria.
So are we to assume undiagnosed kids with autism don't stick out on the tether ball court or the birthday party? As a psychologist I am always on the lookout so I'm not a good judge. What about teachers? My parents, grandparents, several aunts and uncles - all teachers - have a sixth sense for spotting the students who can't fit in or need extra attention. Of course teachers can suggest parents seek an asessment but they can't force one.
So we have an autism rate in South Korea more than double the one here. Certainly there are students in our classrooms here that probably would get placed on the spectrum if assessed but probably not enough to double the current estimates.
We are left with a mystery. Is the Korean estimate an accurate reflection? Or is it biased by some factor related to the Korean socio-cultural experience, the particular sample selected, research bias (i.e. lower threshold for identifying autism) or is it a fluke, a result that will never be replicated. Is the autism rate here underestimated? Are there true differences in symptoms across the globe?
Love to hear your opinions. How many of you think we have a significant portion of children on the spectrum who are not already diagnosed?
You can read the online copy of the study for free right now.
Prevalence of Autism Spectrum Disorders in a Total Population Sample, American Journal of Psychiatry, May 9, 2011 (online edition).