Wednesday, May 11, 2011

Autism Underestimated? Autism Rates Twice as High in South Korea

A new study out of South Korea finds a surprising 2.6% of children have autism.  This 1 in 38 autism rate is more than twice the 1 in 110 estimate for US children.  The researchers looked at symptomatology among not only kids already diagnosed with autism (as is more typical) but those in the general school population.  So what do researchers and thus the media conclude from this unexpectedly high estimate? 

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, WebMD
You 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 Alerts 
Just how many under-diagnosed and under-reported cases of autism are we talking?

Plenty.

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).
doi: 10.1176/appi.ajp.2011.10101532

18 comments:

Liz Ditz said...

Dear Polly,

For the answers to some of these questions, please see the nuanced discussion of this paper by Matthew J. Cary at the Autism Science Foundation.

I for one think that autism is underdiagnosed, and/or diagnosed as something else, in significant US subpopulations.

Polly Palumbo, Ph.D. said...

Good to hear from you, Liz! Especially on this study. Yes, Mr. Cary basically theories the Korean study reflects a more accurate rate in the general population, much like the researchers.

But as usual, I do like to bring up opposing arguments...

Again, thinking about the Korean high-structured, highly disciplined school day, it makes sense how some high-functioning children might go undetected. So if that's part of the explanation then here in less structured schools it goes to reason these children wouldn't "pass" as easily in the US school system.

That said I have no doubt if a similar study were done here among a large swath of schools then researchers would find a higher rate, essentially the high-functioning children. But this gets to the question of whether all these new children belong on the spectrum (i.e. require intervention, the label for a lifetime). It gets to a major issue at the heart of psychiatric diagnoses - if behaviors/symptoms aren't interfering with life (school, friends, etc) then do we give diagnoses? That level of disruption is key in evaluating so many behaviors.

As for diagnoses themselves, the downside to children only receiving IEP with full-blown disorders, rather, the label of such - there are children on the borders with sub-clinical symptoms that would benefit too.

Speaking of the borders, I can't help but think of the many academics and specialists I've encountered over the years who would probably be put on the spectrum if kids today. Some are quite successful. Could they have benefitted from intervention as youngsters? Would they have been better off? I don't know.

Anyhow, thanks for the reference. Anyone who's still reading, go ahead and read Matthew Cary's write up.

TherExtras said...

"MOST cases of autism went undiagnosed!"

Madness. Nonsensical. I think the 'study' authors have some undiagnosed cognitive impairments.

Barbara

Polly Palumbo, Ph.D. said...

Yes, they're called "subjectivitis."
You made my day already, Barbara! Only when they redo the study here it's not gonna be quite as funny...

Liz Ditz said...

Barbara, why do you assume that the study authors are incompetent? I don't understand.

I wonder if you read the actual study, especially the methods section.

In a previous comment, which has since disappeared, I posted a link to a discussion of this study at the Autism Science Foundation.

http://autismsciencefoundation.wordpress.com/2011/05/09/prevalence-of-autism-spectrum-disorders-in-a-total-population-sample/

Polly, if you deleted my previous comment for some reason, also please delete this one, and I will know how you react to substantive discussions of published research.

Polly Palumbo, Ph.D. said...

Sorry, Liz, I didn't delete your last comment nor the one I posted in response- on the contrary I welcome discussion of the research. I also just realized the piece posted is not my final one- somehow that "disappeared" too - I've never had this happen on the blog before. What are the chances?

BTW, I also wrote a lengthy comment in response to your comment and it too has somehow been deleted. Has anyone had this happen with Blogger recently? I know at one point I "saw" your response posted - did you ever see it posted, Liz?

Polly Palumbo, Ph.D. said...

Liz - I have the text from your comment (and my response) in my email, thank goodness and will post them in an hour or so (gotta take the kiddies to school)...

Barbara said...

I read a small amount of original research. Beyond that, I trust a small group of other readers for their reviews. Both you and Polly are in that small group, Liz.

My "attaGirl" to Polly remains true to my opinion of her ability to analyze published research.

I saw many complaints on twitter last week regarding malfunction & lost posts on blogger. This week I read posts stating comments were lost even if posts were restored. Polly has the solution with pulling them from her email to re-publish.

Polly Palumbo, Ph.D. said...

Barbara, so I'm not losing my mind? I didn't delete anything in my PMS/High Pollen Funk? Bless you...

Polly Palumbo, Ph.D. said...

Here's Liz's comment from May 11th that subsequently disappeared from Blogger:

Dear Polly,

For the answers to some of these questions, please see the nuanced discussion of this paper by Matthew J. Cary at the Autism Science Foundation.

I for one think that autism is underdiagnosed, and/or diagnosed as something else, in significant US subpopulations.

Polly Palumbo, Ph.D. said...

Here's my ("disappeared") comment in response to Liz on May 11th:

Good to hear from you, Liz! Especially on this study. Yes, Mr. Cary basically theories the Korean study reflects a more accurate rate in the general population, much like the researchers.

But as usual, I do like to bring up opposing arguments...

Again, thinking about the Korean high-structured, highly disciplined school day, it makes sense how some high-functioning children might go undetected. So if that's part of the explanation then here in less structured schools it goes to reason these children wouldn't "pass" as easily in the US school system.

Here the stigma is nothing like in Singapore where a diagnoses "impugns" the marriage prospects of not just the kid in question but siblings and other family members.

That said I have no doubt if a similar study were done here among a large swath of schools then researchers would find a higher rate, essentially the high-functioning children. But this gets to the question of whether all these new children belong on the spectrum (i.e. require intervention, the label for a lifetime). It gets to a major issue at the heart of psychiatric diagnoses - if behaviors/symptoms aren't interfering with life (school, friends, etc) then do we give diagnoses? That level of disruption is key in evaluating so many behaviors.

As for diagnoses themselves, the downside to children only receiving IEP with full-blown disorders, rather, the label of such - there are children on the borders with sub-clinical symptoms that would benefit too.

Speaking of the borders, I can't help but think of the many academics and specialists I've encountered over the years who would probably be put on the spectrum if kids today. Some are quite successful. Could they have benefitted from intervention as youngsters? Would they have been better off? I don't know.

Anyhow, thanks for the reference. Anyone who's still reading, go ahead and read Matthew Cary's write up.

Liz Ditz said...

Dear Polly and Barbara,

I apologize for my grumpy tone. I'm still pretty stove up and uncomfortable from my Mother's Day accident, and I'm afraid it is getting to my usual sunny disposition.

As to your point about "do these children belong on the spectrum" and "label for a lifetime" -- if they are struggling then at least some help for the child, the child's family, and support is I think required.

I have another non-science reference as to the latter -- do go read Steve Silberman's interview with John Elder Robison, who was diagnosed with Asperger's at age 40.

http://blogs.plos.org/neurotribes/2011/05/18/woof-john-elder-robison-living-boldly-as-a-free-range-aspergian/

Polly Palumbo, Ph.D. said...

Hey Liz, glad you came back and sorry to hear about your accident, hope you're not ailing? I'm afraid my own sunny disposition (??) has been dampened by the weeks' combo of unrelenting rain, pollen and PMS...

As for your very valid point about kids getting help, I agree though like always I wonder why we can't just treat symptoms instead of disorders. We're stuck on that idea for some good reasons but it doesn't always make sense for every child or adult.

Liz Ditz said...

Thanks for your good wishes, the backstory on the accident is here.

And, dear Doña Quixote Palumbo, re wonder why we can't just treat symptoms instead of disorders -- for that, we have to change the laws, specifically IDEA and ADA (504).

Response to Intervention has promise for the most common LDs, with reading and (some) language -- but there's simply no hope (IMHO) for effective intervention for the kinds of challenges kids with autism have, without labels, for the forseeable future.

And I'd guess we would have to change the common assumptions too that if the kids can't perform, it's their fault.

TherExtras said...

I'm feeling bad I have been less active online and missed wishing you a quick recovery from your injury, Liz. Consider yourself wished!

Labels are indeed a two-edged sword. (LOVE Doña Quixote Palumbo!)

"Neither fraud, nor deceit, nor malice had yet interfered with truth and plain dealing" (Book 1, Part 8).

Our work is not yet done, Friends.

Barbara

Polly Palumbo, Ph.D. said...

Thanks ladies for the humor on this grey raining morning/week. Thank godness I read the Don Quixote cliff notes in English (was briefly a French major freshman year, go ahead, laugh, I wanted to work at the UN, a thought that makes me queasy now). That brief stint may explain why I have a slightly skewed interpretation of some classics.

Barbara, again, you surprise me, are you writing a lit crit in your spare time?

Liz, after reading about your Mother's Day, I'm glad you're up and about. I felt geriatric after my minor fall last year. I hope you have a good stock of chocolate and car pool buddies?

TherExtras said...

I just read (most of) the 'Woof' article on John Elder Robison (it was a bit long).

I like the way Robison answered the interview questions. Direct and to the point.

Among the comments was use of the term "double edged sword" and the impending deletion of Asperger from the DSM V. An interesting read...when you have the time, and to comment on it.

Sending youthful thoughts to you both, Polly and Liz!

Barbara

Polly Palumbo, Ph.D. said...

Will check it out, Barbara. Thanks!