Tuesday, May 10, 2011

Individualized attention for every kid: personalized disease?

We all want to feel unique, special, deserving of note or attention.  With our huge research establishment, almost anybody can achieve this yearning.  And not just in terms of skills and interests.  We can, apparently we will eventually, all have our own personalized disease(s).

Results from a large study of autism among Korean children are making a big splash in the health news (e.g., here).  Prevalence of this disorder was studied in a "total population sample" and the results published in the May 9 issue of the American Journal of Psychiatry.  The study is making a splash because estimates of prevalence among Korean kids, 2.64% or more than twice as high as among American or British kids, where it's around 1%.  (We are unable to access the paper online, but the Autism Science Foundation Blog cites it generously here, the source of our quotes from the paper.)
This study was conducted between 2005 and 2009 in the Ilsan district of Goyang City, South Korea, a stable, residential community near Seoul (area, 102 km2; population, 488,590) and representative of the general South Korean population (Korean Statistical Information Service, Capital Region Population, 2006). The target population (N=55,266) included all children born from 1993 through 1999 (ages 7–12 years at screening) and attending Ilsan elementary schools, as well as children in the same age group enrolled in the Ilsan Disability Registry between September 2005 and August 2006. Thirty-three of 44 elementary schools agreed to participate; 36,592 children were enrolled in participating schools and 294 in the Disability Registry...
Two thirds of the cases they found were among kids in the mainstream school population, previously "undiagnosed and untreated".  The authors suggest there could be cultural reasons for this (apparently autism can be a stigma that affects an entire family in Korean society).  They also suggest that kids on the autism spectrum may do better in Korea's highly structured school system than they do in the US, so can be fairly successful even without diagnosis and specialized support, and thus have flown under the radar.

The authors further conclude that prevalence estimates are likely to go up in the US and the UK if their methods are followed.

But, the "autism spectrum disorder" (ASD) category is a fluid one, generally having become broader over the years as more is learned about apparently similar behavioral disorders.  And, as a cynic might say, increasing the topic-pool for researchers, special ed programs, and other interests. The broadening of the definition, as well as the increased awareness of the spectrum have correlated with a rapid increase in prevalence of autism in the US over the past several decades.  Thus, it has been difficult to sort out whether the increase has been largely due to changing definitions and awareness or in fact to more cases.

Therefore, the suggestion that because prevalence is higher in Korea than in the US means that prevalence has been underestimated in the US -- and that thus many children are being denied treatment and schooling that would improve their chances of success -- assumes that prevalence is real and there to be uncovered rather than at least somewhat dependent on definitions and awareness.  We aren't arguing at all that the disorder doesn't exist, simply that if you throw more symptoms into the pot, you'll get more kids with what is called ASD. If behavior has a distribution, as it seems to--such as a 'normal' distribution--then it's a continuum and one can choose whatever cutoff points one wants to define a person's trait.

Not surprisingly, the intensive and very expensive search for genes 'for' ASD has yielded no genes with large effects.  This is because autism is a complex trait, and like all complex traits, is more likely to be polygenic than due to single genes.  The heterogeneous definition of the trait doesn't help, either. The more continuous the distribution of what's being measured, the more likely it is to be complex--that's the nature of nature.

But the suggestion in this paper that it's incumbent upon researchers to estimate the true prevalence of ASD so that affected children can get the individualized attention they deserve (which they certainly do) is troublesome.  What is 'true' depends on where you draw the line, even if measurement and interpretation were perfect.  Wouldn't every child benefit from individualized attention, whether or not they have been diagnosed with a disorder?  The brightest kids get it, and thrive.  Athletic kids get it, and musical kids, kids into mechanics or art or theatre, as well as kids with labeled disorders. But these labeled kids are the only ones with IEPs (individualized education protocols).

There are several issues here.  One, the solution isn't to label more kids but to give more attention to every kid.  Yes, that's asking for a fundamental remake of the public school system but rather than expand our definitions so that, say, shyness becomes social anxiety disorder, and thus druggable, and every child with any symptom along the autism spectrum becomes treatable, it would behoove us to recognize that all behaviors fall along a spectrum.  And every child deserves an IEP.  And two, we should not give in to the pressure to dope everyone up on maintenance meds.

13 comments:

Holly Dunsworth said...

I look around and I see humans making humans and then ignoring them and it's inhumane.

Ken Weiss said...

Yes, well that is a major problem. Too many people, too little care. The making is more fun than the caring. It's always been a potential problem (as Malthus stressed!). But in the age of effective contraception things should have changed. The no-sex movements that we sometimes read about seem to have had little effect!

And now some countries, like Russia recently, are trying to persuade their stoic populations to make more merry....in a world that already has 6 or 7 billion.

Holly Dunsworth said...

Parenthood is more than not dropping your egg in home ec, but how do you teach the real gravity of it to kids?

Brenda Frazier said...

Well said, Anne! Thanks, Holly, for alerting me to the post. *Very* thought-provoking.

Holly Dunsworth said...

This also reminds me of the observations that incidence of depression has risen in regions of the world where antidepressants have just been introduced.

Ken Weiss said...

The incidence of reading disability is probably correlated with the existence of schools, too! How often are such things circular or based on definitions?

Anne Buchanan said...

Thanks, Brenda! And I agree with all your points, Holly. (But, you don't think that having kids lug around a 5 pound bag of flour for a week teaches them the gravity of the responsibility of parenthood? ;-) )

Holly Dunsworth said...

Gravity's a lot harder on eggs than bags of flour :).

Anne Buchanan said...

Indeed. :)

Pat Shipman said...

My feeling is that NOBODY understands what parenthood is like until they have a child. Even educated, realistic, savvy people -- or for that matter uneducated, daydreaming, flakey people --have peculiar expectations of what it will be like in my experience. Mother Nature is the best teacher.

Also, of course, if autism spectrum is massively underdiagnosed (and it might be) we need to face the fact that a fair number of autists have managed to survive & thrive without special interventions. Take Temple Grandin for example. I am told they all live in Silicon Valley.... LOL

Ken Weiss said...

Very good points. Except...I want my personal tutor and I'm sure I can get myself diagnosed with something to qualify me for one....given my many deficiencies.

Holly Dunsworth said...

based on comments here and on facebook, I'm worried that my initial (very first) comment is being misunderstood. "ignore" is the big picture ignore... not the day to day stuff. I was relating to the post and referring to how we don't care about people around us as much as I'd like us to.

Holly Dunsworth said...

And to reply to Pat's second point to Ken's reply, I agree... I worry that our limited vocabulary (e.g. "disorder") and our propensity to label people can be harmful.