A new study found that the autism rate in a middle class South Korean town is 2.6 percent. In the US, the autism rate is around 1 percent. They identified a higher number of mildly affected children than we have in the US, many of whom had a superior IQ.
The implications of the study are clear, even if they weren't stated in the article. Let me spell it out. The real rates of autism worldwide are even higher than we think. In addition to the highly affected kids who are already identified, there are a large number of mildly affected kids, many of whom are in gifted and talented classes, who have undiagnosed autism.
Apt. 11d 
I have a Korean mom friend locally (not Korean-American, Korean-Korean). She says that in Korean culture, the polite way to look at your interlocutor is to focus on their chin.
LikeLike
I realize now that a neighbor kid I grew up with is/was autistic and so was his father. Both really smart, odd guys. The dad was a brilliant photographer (landscapes)and engineer. Conversations were awkward and infrequent. The son was really taken with how things smell- had this highly sensitive nose, and I’ve seen from his sister’s facebook, he works in the perfume industry now. He was a quirky kid, I’d like to know him as an adult.
I think people on the spectrum are far more common than we have ever realized. I think it’s this way with most “disorders” (ADD, OCD, etc.) we now identify. They’ve always been here, but we now have a commonly recognized name for them.
LikeLike
She says that in Korean culture, the polite way to look at your interlocutor is to focus on their chin.
If I remember sociolinguistics right, in this country even, certain urban cultures have it that you look away when someone’s talking to you/looking at you. Basically the lesson was lack of eye contact did not necessarily mean they were not listening.
But I should hope the researchers did more than look for eye contact.
LikeLike
Basically the lesson was lack of eye contact did not necessarily mean they were not listening.
The real trick is to be able to make eye contact and not listen.
LikeLike
Semi-related, there is a piece in today’s Philadelphia Inquirer about the increasing presence of students with Asperger’s in college.
I have no doubt the rates of autism are greater than is generally publicized. The question is, is it more or less helpful for those on the high-functioning end of the spectrum to be so identified? And will lower-functioning people on the spectrum benefit from increasing awareness of high-functioning autism?
LikeLike
The implications of the study are clear, even if they weren’t stated in the article. Let me spell it out. The real rates of autism worldwide are even higher than we think.
Or, people are using slightly different standards (in part because it’s not really clear what the standard should be), and with things that are diagnosed behaviorally (as opposed to via etiology- a firmer bases), there’s reason to think that different sorts of things are lumped together. With all of this stuff, the best advice is “be careful, move slowly with a critical eye, and don’t jump to conclusions”, or so I’d think.
LikeLike
“The question is, is it more or less helpful for those on the high-functioning end of the spectrum to be so identified? And will lower-functioning people on the spectrum benefit from increasing awareness of high-functioning autism?”
Great questions, John.
Yes, identification is helpful for high functioning children (and adult). Sure, they are able to function in classrooms and find suitable careers later in life, but they have deficits that are never addressed and talents that may get ignored. They may be getting bullied at school. They may struggle in certain subjects or social situations. Identification brings therapy and greater understanding and acceptance from family, school, and community.
Understanding the higher functioning autism, helps kids and adults on the rest of the spectrum. Because of problems with speech and language deficits, we have trouble understanding the lower functioning kids. The higher functioning individuals can explain how they think and how they struggle. Temple Grandin, for example, has been able to explain why pressure made her feel better.
Identifying higher functioning individuals with autism gives us a broader understanding of autism. It is more than deficits. It is entirely different way of perceiving the world, which can be both an asset, as well as a deficit, in life.
It has political benefits, as well. As we learn that autism affects more individuals than we previously thought, then more money can be put aside for research and therapy.
LikeLike
“The question is, is it more or less helpful for those on the high-functioning end of the spectrum to be so identified?”
I have a tenure-track neighbor who is very bright, but it would be very easy to read him wrong. He’s very sweet and friendly, but he doesn’t always notice greetings, he has trouble talking to more than one person at a time, and he’s a bit naive. If you didn’t know more about him, you’d think he was arrogant and unfriendly, which would be totally incorrect.
“And will lower-functioning people on the spec And will lower-functioning people on the spectrum benefit from increasing awareness of high-functioning autism?”
Not for the lowest functioning, but there’s probably a benefit for people who are average-ish, but would be misidentified as just being slow. If a child is identified as being on the autism spectrum, there may be more of an effort spent on figuring out what their strengths are, because having isolated strengths (“splinter skills”) is normal for people on the autistic spectrum. To go from, “This is a slow kid” to “I wonder what this kid can do?” is an improvement, I think.
LikeLike
“Yes, identification is helpful for high functioning children (and adult). Sure, they are able to function in classrooms and find suitable careers later in life, but they have deficits that are never addressed and talents that may get ignored.”
It seems that the threshold for diagnosing becomes more liberal each year. My neighbor boy was diagnosed as autistic right before he started school as a necessary requirement to receive services. He doesn’t struggle with any of the problems that trouble typical autistic kids; he’s highly verbal, does well in school, has friends, does well in sports, has no sensory issues. His main and only problem is with explosive anger. Does that make him autistic? I really don’t know but I’ve wondered what benefit he gets from the diagnosis that he would not get from just addressing the anger problem. The issue of whether or not to diagnose seems to concern kids like him who are at the very tail end, or perhaps are just on the other side of the “typical” threshold, who grapple with just one behavioral problem or with very mild problems in several areas. Increasingly the trend is to diagnose and treat them with the thinking that it’s better to over diagnose and treat than potentially miss kids who might exhibit greater challenges as they age.
LikeLike
But why does your neighbor have the explosive anger problem? If the kid is really autistic and doesn’t have emotional problems, then he’s acting out because of other autistic deficits. He could be not fully understanding verbal directions. He might be having trouble articulating his frustrations. He may have an irrational need to keep to certain routines and can’t handle change. He may have trouble with transitions. He may have sensory problems, but not have the tools to explain what’s bugging him. Language is a tricky thing. He may appear to be very verbal, but he may actually be struggling with more advanced language.
LikeLike
It certainly could be. From what I’ve seen and what his parents say none of those things are an issue for him. There is an autism pull-out classroom in his school where he can go but since his anger isn’t aided by the type of instruction there he never goes. There’s an aide in his classroom that can help if need be but since he only needs help for the occasional fiery outburst he rarely uses that service either. He got the diagnosis so he could receive services but since the services don’t fit his particular problem he’s just left with the diagnosis.
LikeLike
That’s a problem with the school and the services, not the diagnosis. If the kid really has an ASD (he may not), then the problem is definitely not just completely random outbursts. It isn’t. He’s having outbursts for a reason. He should be assigned an aide with ABA training, who can figure out what the problem is and then help him manage the problems better.
LikeLike
I think Laura’s points are important for the kid (if he is autistic), but what saddens me is if he isn’t autistic, but that’s the only diagnosis that he could get services for. Not having enough information, I don’t know that it’s the case, but it’s certainly a possibility that comes up with the way the situation was presented.
(After my aunt was given an adult diagnosis of ASD/Asperger’s late in life for disability benefits reasons–before that she was “lazy” or “sensitive,” but as someone who couldn’t hold down a job and was a ripe target for scammers, she needed some of the protection the diagnosis provided–my mother saw ASD and Asperger’s everywhere. She probably got some on-the-street sightings correct, but I’d reckon not all of them.)
LikeLike
I don’t want to derail the thread with this kid’s individual story but my larger point is that there are some kids being diagnosed with autism who fall into a gray area where they could be or they couldn’t be but the trend is play it safe and diagnose. There are a lot of good reasons to do that but I think the dangers are that the diagnosis might not be an accurate reflection of the child’s problems and it runs the risk of pathologizing difference.
I’m in Minnesota which is the state with the highest rate of autism diagnoses in the country which has definitely shaped my thinking about where to draw the line between typical child and very high functioning autistic (My thinking: Even the experts don’t have a good understanding of where to draw that line so incidence is a better indicator of the number of children receiving services under the very broad banner of autism rather than a hard indication of “true” rates.)
Off to try and find the original article…
LikeLike
I think the general feeling that is being expressed or felt — if not explicitly — is that
(1) every kid should get all the help they need to address their issues, and
(2) it is a lot easier to get that help if you have a “diagnosis”, but
(3) sometimes the value of the diagnosis is to get you in the door to services, even if it’s not actually a valid diagnosis.
If a kid has social problems, then that kid should be able to get the appropriate help for it. If the social problems are caused by “autism” or “Aspergers” or “social anxiety disorder” or “bipolar disorder,” and we know that, we can diagnose the kid, and put her into a framework of treatments.
Often, though, all we know is that a kid has a problem. And, if our current mindset, there are two ways we can go with a kid who acts up or has anger problems — diagnosing the kid with a specific thing, or deciding that you just have a “bad kid.”
Because that’s what we think. Right? If the 10 year old is beating up other kids, and he doesn’t have a learning disability or Aspergers or whatever, and he’s got behavior problems, then the problem is that your kid sucks. So we need that diagnosis, even if it’s not very helpful.
I think the problem is that we have no way to say the following: “My kid has issues that we need to address. He does not fit in to any diagnosis in the DSM, but he’s a kid with problems, and therefore he needs to be helped.” We have no way of helping people with individualize problems, or recognizing the need to fix someone without first seeing a medical diagnosis that something is broken.
LikeLike
What if the child’s doing fine? What if neither he nor his parents feel “something is broken?” What if hanging a diagnosis on a kid curtails his educational opportunities?
It’s all very well to posit an ideal world in which a student will receive a little social skills training, and be even more successful. I know that diagnosing a child as autistic may lead teachers not to place him into a more challenging course, because they’re afraid of overburdening him.
Placement into honors levels already depends on social skills in many schools–take a look at the blog “Out in Left Field,” by Katherine Beals, for examples. http://oilf.blogspot.com/ As luck would have it, her most recent post includes this paragraph (writing of a recently published study):
Less obvious is why so many mathematically gifted students are characterized as “indolent, underachieving and unsuccessful despite their high cognitive ability.” The article blames their “poor social valuation and mentalization” skills. While it’s easy to imagine how this impedes “success” (at least as popularly defined), it’s less obvious how it leads to indolence and underachievement…
LikeLike
The study is available for perusal, btw:
Kim YS, et al “Prevalence of autism spectrum disorders in a total population sample” Am J Psych 2011; DOI:10.1176/appi.ajp.2011.10101532.
I think the methods used in the study are complex, and they don’t completely convince me that the incidence is 2.6% (though I do think the authors are being pretty through and careful, there are multiple adjustments of rate calculations to account for differences in response rate — a common problem in this kind of study).
And, even accepting the numbers, I’m wary of two things about studies like this. The first is that expanding the number of people identified with a disorder (for lack of a different word) raises the worry that we are medicalizing deviations from the typical. 2.6% is still a pretty low percent, different enough from the norm that we might really consider this tail of the distribution an issue to be addressed. But, what if the numbers expanded, to 5% or 10% or 20%? Then, would the spectrum of symptoms
be a “disorder” or would they reflect human variability?
My second issue is that the “medicalization” of behavior can play out in different directions politically. This study received funding from Autism Speaks & the senior author on the study is Roy Roger Grinker, the author of “Strange Minds.” I think they hope it will have the positive benefits of encouraging services for children who need them. But, I don’t think that the science determines the outcome — people’s choices do.
LikeLike
For example, will these newly identified children in Korea receive services? Will the labels encourage parents to seek out services (even if they are not provided)? Or will they be stigmatizing?
I’m all for pursuing the science, understanding the true incidence of sets of symptoms. But, we’re fooling ourselves if those numbers alone will change the political and social landscapes.
LikeLike
I’m agreeing with Cranberry to some extent (I think the idea that a problem should exist before we use screening instruments to identify a disorder is a basic premise of screening instruments, especially psychiatric/behavioral ones.) But, I think the flip side, expressed in Grinker’s work, is that in places like Korea, autism can be so stigmatized that it can result in the abandonment and institutionalization of children, their disappearance from society and a pretense that they simply don’t exist.
Wider publicity and an understanding of the spectrum could indeed have positive effects in this landscape.
LikeLike
For a clear cut case, a diagnosis can be very helpful. But there seem to be a lot of marginal cases, and there’s been a ridiculous proliferation of diagnoses–every single problematic behavior does not need to be its own psychological disorder. Ross Greene (the author of “The Explosive Child”) says in his very interesting “Lost at School” that a child doesn’t need to have a diagnosis to have a problem, a child just needs to have a problem to have a problem.
If public education were more individualizable, it wouldn’t be necessary to be chasing a diagnosis.
LikeLike
Lots of points:
1. I don’t think that autism is a disability. I mean, sure, even lightly affected people struggle in certain areas. But in other ways, autistic people may do things better than the rest of us. I mean off the charts, genius. I’ve seen it.
2. re:an autism diagnosis leads to marginalization in schools and society. Yes, sure. In many places that happens. But here in NJ where 1 in 60 boys has a diagnosis and every other car has a magnet on the trunk, there isn’t much shame in it. People are getting better educated about autism every day and it makes me happy.
3. re: some kids get wrongly diagnosed so they can get services. Yeah, that shouldn’t happen.
4. I don’t think that autism is a psychological disorder. It’s a neurological difference. People either have it or they don’t.
5. The lighter cases are indeed sometimes difficult to diagnose and maybe those kids blend well enough, so a diagnosis doesn’t bring them any needed services. That’s fine. But that’s a different issue from a study that simply shows that there are more people with ASD than we previously thought.
6. There are a lot of adults with autism who blended just fine into mainstream society. University degrees. Families. and all that. In fact, they never knew that they had autism until they diagnosed themselves later in life. Tyler Cowen wrote a book about this. The diagnosis helped him to understand himself better, and in fact, he thinks that his autism was an asset in his life.
LikeLike
“Then, would the spectrum of symptoms
be a “disorder” or would they reflect human variability?
It’s a neurological difference. People either have it or they don’t.”
I guess this is a point of contention. More and more I feel like autistic behaviors are not unique, they appear in the typical population all the time, it’s the obsessive and overwhelming nature of the behaviors, the inability to stop that makes it autistic.
Can’t find it right now, but I recently read something from the father (I think?) of a child with autism who witnessed a terrible car accident. There was a woman who also witnessed the accident who started flapping her hands when it happened. He talked to the woman and didn’t think she was autistic (although he was very clear that he no definitive way to tell) just that the experience was so stressful she started hand flapping as a coping mechanism. It was eye-opening to him that this behavior that is tied so directly to autism might be a normal stress-response. (Also, distressing that when his child hand-flaps s/he might be experiencing a level of stress akin to witnessing a horrific accident.)
In my dream world, people with autism get all of the individualized services they need to function to their highest potential. But, services would be complemented by a greater acceptance of difference such that people wouldn’t be scandalized if they saw an autistic child or, god forbid, an adult acting out at the grocery store.
LikeLike
“4. I don’t think that autism is a psychological disorder. It’s a neurological difference. People either have it or they don’t. ”
At the risk of offending our host, autism has no known neurological etiology. It is a neurological difference, but in the same ways that depression, schizophrenia, and mental retardation are. In the end, they are all about the brain, and thus have to have a neurological cause. We just don’t know what those causes are (and we’re no closer to knowing the answer in the case of autism than we are in depression).
In addition, no one who diagnoses autism would say “people either have it or they don’t” (in fact, that’s not even true about diabetes, which is diagnosed on one relatively simple variable — blood sugar levels after consuming sugar). In the Korean study, children were referred after screening with Autism Spectrum Screening Questionnaire. The children who scored in the top 5% were referred for further diagnostic testing. This threshold was arbitrary, and was set to catch as much ASD as possible.
The second level of diagnostic testing was done with the ADI-R (a 93 item questionnaire with a trained clinician interviewing a parent or a caregiver) and the ADOS (an observational analysis).The ADI-R does calculate a categorical score (but it’s not clear from the manuscript whether this categorical score was used to diagnose autism — a clinical judgment was made).
Of course the details will vary with any specific diagnosis of autism, but chugging through this manuscript suggests the difficulties inherent in diagnosing autism.
Now, it could be true that children either have autism or not, but that we don’t know exactly how to diagnose it. But, I’m not sure how I would test that particular hypothesis.
The bottom line is that autism is a spectrum disorder (and, since ASD stands for Autism Spectrum Disorder, I’m using the words as terms of art, without taking a position on whether “disorder” is a bad thing). Spectrum disorder means that the range of symptoms vary within the spectrum (and, in fact, might be present in some who don’t end up classified there.
Mind you, in the end, I agree that autism is a neurological difference (but, I think the same about depression and schizophrenia and adhd, too).
LikeLike
“But that’s a different issue from a study that simply shows that there are more people with ASD than we previously thought. ”
It really isn’t, though. Having now read through the Korean study, I think my big issue (if I had been reviewing the paper) is the issue of non-respondents. After identifying the 5% of the children with the highest scores on the ASSQ (which, incidentally you can find if you do a google search for it), the researchers tried to contact a a sampled population of them for further evaluation. Of the 1700 screen-positives they started with, only 294 finished the diagnostics. In addition, they found that there was a correlation between ASSQ and the likelihood of completing further evaluation (i.e. children who were rated “more autistic” on the ASSQ were more likely to try to get further evaluation for their children). But then, with a funny bit of math I don’t understand, they conclude that higher ASSQ didn’t mean that the children were more likely to be diagnosed as autistic, and thus impute the same statistics to the non-evaluated population as to the evaluated population.
This little bit makes me quite wary of accepting the 2.6% as any form of stable baseline. Though, perhaps, on deeper reading I could find the math I didn’t understand convincing and increase my level of acceptance of the conclusion.
LikeLike
(on iPhone. Excuse typos)
Steve works on the same floor at the quant guys who write the algorithms that control the stock market. Do you know how many of the have ASD’s? All of them. Steve even caught one of them hand flapping. Do you know how many programmers at Microsoft, academics, and blog writers/readers have autism? Quite a few.
These people are successful not despite of their autism, but because of their autism.
Autismshouldn’t be grouped with schizophrenia or be in the realm of psychiatry. I think of it more like homosexuality – you have it from birth, it affects multiple dimensions of your life, and it doesn’t make you better or worse than the mainstream.
LikeLike
Just as long as nobody makes a TV show where people with ASD run around and correct my code.
LikeLike
“Just as long as nobody makes a TV show where people with ASD run around and correct my code.”
Just like American Idol, but much more boring?
LikeLike
I was thinking of “Queer Eye.”
LikeLike