A very cautious guess about the spike in autism
The CDC yesterday released a study showing that autism rates have spiked. 1 in 88 kids are affected. What the hell is going on?
People have speculated about possible environmental cause, as the president of Autism Speaks seemed (arguably) to suggest. Or better detection:
[CDC scientists] said that most if not all of that startling increase could be due to better recognition of the disorder by parents, doctors and teachers.
“There is the possibility that the increase in cases is entirely the result of better detection,” Dr. Thomas Frieden, head of the CDC, said at the briefing.
I have a very cautious guess about at least a part of the increase in prevalence that I brought up in the comments thread on Dr. Saunders’s post on the new autism guidelines. I have only anecdotal evidence for this. Simply put, part of it may be the case that it is in the interests of parents of kids with related (but different) disorders to get a diagnosis of ASD.
People with developmental delays (DD) often have some significant overlap with those with ASD. My DD kid has a severe language delay, sometimes zones off into his own world, rocks his head, pulls his hair, bites his arm, freaks out at certain sensory inputs and seems nearly immune to other sensory inputs. Kind of like a kid with autism. But he also tests at near age-appropriate for social and emotional skills (the only area of development where he comes even close). He makes eye contact, follows conversations, gets jealous when I pay attention to other kids, tries to get the attention of others, laughs at funny things, imitates his peers, understands and responds to others’ emotions. Not like a kid with autism.
But an ASD diagnosis gets much better services (such as speech and physical therapies) than does DD. (I gather this varies widely from state to state and county to county). It’s better studied than DD, and so there is more evidence that such therapies work. It is widely assumed that these therapies also work for DD, but DD kids don’t get as much. So parents of DD kids angle for an ASD diagnosis. They advise each other on how to get one, and usually there’s enough overlap with autism and a sympathetic doctor to get one, if a parent is persistent. I wouldn’t be surprised if a parent of kid with simply a speech delay would have a similar incentive.
I have absolutely no idea how prevalent this is or if it is prevalent enough to actually affect the statistics. I note with interest that despite a hugely increased awareness, the average age for diagnosis of autism is 4 years old. That seems pretty old. I wonder if part of that is because people have tried and failed to get their kids services without a diagnosis of ASD. So then they go for it. I suspect that the new autism guidelines are put in place in part to stop this. Yet I haven’t heard it mentioned as a possible reason for the recent spike in diagnoses.
The incentive exists. The increased detection might not be better, just more inclusive.
I can second your anecdotal evidence. I’ve seen it happen.
The Autism Speaks people make my teeth ache.Report
hmmm aching teeth….tell me more about that. (strokes beard)Report
Can’t. I get ranty. You can look here. And here, here, here, here… I could go on.Report
Anger is okay…its how you express it that can lead to problems. I hear this upsets you.Report
Dude, they get into your head. And I know better. Really, I do. And I still had a minor panic when my baby was cranky for a couple of days after his 2 month vaccines.Report
This is why they make me so ranty. Ranty. Gar. Now I’m ranting in my head.Report
Are those people like dear Amanda Baggs, the “friend” I knew at CTY, before she had enough drugs to decide it would be fun to be autistic? (apparently she got interviewed by CNN, I had well and truly lost track of her…)Report
Part of this report is really questionable. They took not only kids with a ASD diagnosis but also “those whose school or medical records included descriptions of behavior typical of the disorder.” That is just shoddy, i’m surprised the CDC would do that in what appears to be a high profile report. ASD’s have a huge range of symptoms and those symptoms can be caused by many things. Other then that i tend to think the spike is due to better diagnosis and awareness. Asperger’s is a trendy diagnosis which is a bit over-diagnosed. It really exists but its used for eccentricity sometimes instead of for true problems. Looking for better funding certainly might be part of it. However i think all the trendy psych diagnosis share two main factors: they are biological and/or genetic. I think there is strong desire in parents with a troubled kid to look for a cause that does not involve parental substance abuse, abuse, neglect, high conflict divorce and just plain chaotic lives. To be clear ASD’s really do exist. I used to be a therapist and treated kids with PDD and Asperger’s. But i also saw, and still do, a lot of messed up family dynamics that were far more salient to why a child was struggling.Report
I wonder why they’d even do the study and trumpet results, in advance of the changing guidelines, where the incidence will drop.Report
I note with interest that despite a hugely increased awareness, the average age for diagnosis of autism is 4 years old.
There’s actually a much more mundane reason for this. While recent developments have made it possible to diagnose autism as early as 2 years, it’s still much easier to diagnose it at later ages, and the less severe the autism, the more difficult it is to diagnose it at earlier ages. The average age is actually going down, rather than up, which wouldn’t fit your explanation.
That said, my suspicion is that parents looking for autism diagnoses, and even physicians resorting to them, while more common now, can only account for a small portion of the variance. I think it will be some time before we really have any idea what’s leading to the increase in diagnoses.Report
The average age is actually going down, rather than up, which wouldn’t fit your explanation.
True. Unless parents of kids with other issues are also alerting to problems earlier. But just to be clear, I’m suggesting this as a possible contributing factor, not as an explanation for the entirety of the spike.Report
One of my best friends is the psychologist for the school district. (Really cool story about that here)
The incidence itself appears to be higher, not merely the diagnosis of it.
There appears to definitely be some sort of environmental factor.
Around this place anyway.Report
Autism is most diagnosed among the elites, partially due to older birth-mothers. But the best explanation for the epidemic is that — autism didn’t used to be a life-altering problem. If you were a farmer, it didn’t much matter if you liked things done in a particular order, and were kind of quiet in town. You did what you did, got paid, and because you didn’t experience as much change on a daily basis, you weren’t nearly as stressed about it either.Report
My husband’s close relative (in her 60s) has what would definitely be diagnosed as reasonably high-functioning autism today. Speaks in full complex sentences, etc. But she has many of the other hallmarks, including social/emotional problems, inflexibility, obsessions, and mild intellectual disability. She only ever got diagnosed with having seizures. She lived in an intimate immigrant community. But it was definitely life-altering. She stopped school at age 12 and never lived independently and never had a job. Enormous stress on her family which continues to this day. I’m pretty sure she’d be able to live semi-independently and have some kind of job had someone recognized it for what it was and worked with her.
Just…no one in the community knew what to call it.Report
I have one nephew with severe autism and two others with Asberger’s Syndrome. Furthermore I know that the Seattle area has an unusually high prevalence of autism. I don’t believe it is environmental, but do believe it has to do with the IQ’s of the parents. High IQ parents (such as high IQ Microsoft couples) have about a 1 in 20 chance of having a kid with autism. I’m not talking run of the mill intelligent here, I’m talking about legitimate 145 and up IQ scores on both parents’ (and families) sides. Still just a theory, but some pretty high correlation.Report
High IQ parents (such as high IQ Microsoft couples) have about a 1 in 20 chance of having a kid with autism.
If that’s true, an increase in assortative mating could result in an uptick in autism cases. I mean, assuming that there’s actual synergy and not just “One high-IQ parent means an x% chance of autism and two high-IQ parents means a 2x% chance.”Report
There is also the possibility that high IQ parents tend to be high income parents and high IQ/income parents tend to have the wherewithall and the means to seek out diagnoses and services.
The trouble with considering any rates of special needs is that diagnosis is so incosistent. Autism is not cancer, which can be objectively detected and near everyone affected with the disease eventually seeks care. Many kids with needs, especially less severe needs, are never diagnoses. This is especially true if they come from lower income families, families with limited access to or awareness of support systems, or communities in which special needs are more heavily stigmatized. Add in the trend of parents who seek diagnoses, going from doctor to doctor until they get the answer they want, and doctors who are all too happy to slap a diagnosis on any kid who isn’t perfect and I take all these numbers and people’s attempts to draw much conclusion about the needs themselves with a boulder of salt. These numbers tell us more about our response to the potential for special needs than special needs themselves.Report
Although I should say that seeking an ASD diagnosis for a seriously DD kid (not a kid who just has some minor delays) cuts across class lines (again, anecdotally – n of really really tiny). I have about 150 fb friends who have the same or similar syndrome as my kid. Another couple hundred or so families show up to the annual syndrome conference. A large majority are working or middle class. And they do it at the same rate as the higher-income parents. Actually, now that I think about it, maybe more. The mom I mentioned who lied about her kid’s eye contact was definitely lower-income.Report
Thanks for the insight, Rose. I was speaking more broadly about less-easily-diagnosed needs. Kids with language processing delays/difficulties and who otherwise present as typical can easily be labeled as simply below average learners and get shuffled along accordingly. Nothing about their needs screams out unless you know what to look for. If they happen to be in an overcrowded classroom in an underfunded district with parents working two jobs, they easily slip through the cracks and are simply thought to be not too bright. That is just one example.Report
FWIW, I had spoken with a psychologist about this, and part of the criteria for diagnosis is the effect on daily life. Even if all the symptoms are present, if there is no significant impediment of function in normal activities, then the symptoms are “clinically insignificant.”
That said, there is some amount of judiciousness with diagnoses among psychologists. I remember a story about a behavioralist that didn’t believe that ADHD was a discrete condition other than a behavioral syndrome, and yet routinely diagnosed children as having ADHD, with the reasoning that there is likely some manner of problem by the time the kid comes into the psychologists office, and would be unlikely to receive any manner of help otherwise.
Which is to say, psychologists are people too.Report
… and then I realized this identifies the vehicle by which the phenomenon noted in the OP occurs…Report
Yes.Report
Some more anecdotal evidence, fwiw (I know, I know, it’s worth nothing). Kids of philosophers seem to have a higher rate. Pretty unmistakable autism. (philosophers also tend to have kids when they are older, too….)
And, on the other side, I live in a different high IQ area, with playdate mom friends who are older, higher-income, high IQ (the large majority of moms and dads have grad degrees). I’d say maybe 10-20% of their kids get services of one kind or another. For problems like not walking until 15 months. I mean, these kids seem crazy normal to me. Or just like slightly oddball kids. I don’t know whether they got an ASD diagnosis.Report
There are many micro-communities in which not excelling equates to having something “wrong” which leads parents to pursuing largely (if not wholly) unnecessary services. Parents seek ADHD diagnoses and meds for high-energy boys, LD diagnoses and tutoring for kids who aren’t reading chapter books by 5, and OT for 1st graders who simply aren’t interested in sports. I don’t mean to paint with broad strokes, as there is clearly a great need for services and many parents properly take on the role of being the chief advocate for their child (often in the face of beuracratic resistance from “the system”). But some kids simply don’t need the services they receieve. Which is problematic given the supply-side limitations on the public side and the increased cost that artificially high demand creates in the private sector. Add in the private doctors/therapists (a small minority, I’m sure, but no less a problem) who are all too happy to offer a diagnosis AND the subsequent services, as if there is no potential conflict of interest. If parents are going the wholly private route, I tend to recommend they seek evaluations from a different person than they would seek services from, unless there is already an established relationshipReport
The asparagus disease too often serves as an excuse (no, i will not learn how to spell it in german), just like people who say they have ADD.
Yeah, some people got it. Others got misdiagnosed.
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You mean Ass Burgers?Report
yes. but it’s named for asparagus, because the family that had it was the only people in the village who would eat the stuff.Report
it’s named for asparagus
Hans Asperger might be surprised to learn that.Report
no, it’s his family i’m referring to. It ran in his family, ya know?Report
I think in general for these sorts of discussions, it’s best to remember that there are no physiological symptoms involved (besides “clumsiness” whatever that means) in many of these diagnoses, and so any statistics we read are likely to have a huge error rate, possibly at the same order of magnitude as the statistics themselves.
I’m going to sort of think out loud here and wildly hypothesize some things.
(1) As much as the media likes to report the increase in autism diagnoses, the increase in allergies and asthma should give us more pause. I’d speculate myself that a lot of the reason for the lopsided coverage is that children diagnosed with autism tend to be wealthy and children with life-threatening peanut allergies tend to be poor. Anecdotally speaking, my mother teaches kindergarten in a relatively low-income community. Every year there are more and more kids who will die if they are exposed to any whiff of peanut butter sandwich. There were something like eight kids with life-threatening peanut allergies in the school last year, and this sort of thing was unheard of when I was going to school.
(2) Ultimately, I think the phenomenon you describe definitely occurs. I’ve heard parents discussing it. It’s widely known that an ASD diagnosis gets you more services than some less-sexy developmental disorder. It’s sort of like I’m wearing Lacoste, and all you have is Izod. And this reminds me of what pisses me off the most about this whole thing, and that is the idea that if a child is “abnormal” or doesn’t excel in absolutely everything, that child must be labeled by society with a “disorder”. Our education culture pushes this mentality, although it’s not entirely responsible. My mom has had to go through training and retraining related to “recognizing” ASD, and it’s in her interest to recognize it: instead of a student’s poor academic performance being blamed on the failure of the teacher or on the failure of the student, that poor academic performance can now be face-savingly blamed on nature. What we really need to realize is that every child has his or her own special abilities, and those aren’t necessarily long division or state capitals.
(3) Part of our obsession with type-casting and labeling ASD is due to an ongoing cultural backlash against hyperspecialization. I might hash this idea out at some point, but the main thrust is that, for so long we’ve fetishized specialization, and now the pendulum is swinging back to generalism.
(4) In general, I think there is definitely overdiagnosis, but this overdiagnosis is a totally different problem from autism itself. The overdiagnosis clouds and distracts from what we should really be looking at, which is the autism cases that have real, physiological symptoms, such as abnormal neuroanatomy or underdeveloped regions. Without having access to a time machine, I would have to assume these cases are environmentally caused, since we probably would have detected a pathogen by now and we can rule out genetic (though not necessarily genomic – kind of a special case of environmental) causes, and all of the new public health problems of our age seem to be caused by environmental toxins (that word broadly construed).Report
Chris: 1) is linked to Global warming, fairly causally, and also linked to air pollution (smog, etc.) I can cite the Center for Environmental Oncology if you want more info. It’s not sexy if you know what causes it.
4) I just don’t think autism was something that needed to be diagnosed in the 19th century. It wasn’t a problem — or at least much of one. So part of it could very well be genetic, and just “not diagnosed because who worried about someone a little quiet or strange?”Report
Well, I’m not sure how you could link it to global warming, so I would like to see that study. Otherwise, I’m aware of a study in China where air pollution and asthma are both spread around cities (China is the best place to do that sort of study since pollution levels are high around cities and virtually non-existent in rural areas). That seems like pretty solid epidemiology right there, as solid as epidemiology can be, which is not very solid. Although I listened to a lecture last year that suggested asthma is localized to seven separate gene markers, one of which indicates an especially persistent and difficult-to-treat form (I’m working off memory here, so I may be fuzzy on the details). In that case, asthma is a genomic disorder, which makes it environmental in a slightly more complex way, although I think saying something is “genomic” is sort of a cop-out.
Your point about no one really caring or noticing in the 19th Century is a good one. Who knows what disorders we’re all oblivious to today!Report
Ping the upmc center for environmental oncology. they showed the video. I think the actual research was about asthma in the Carribean, coming from dust storms in Africa that were preferentially carried due to global warming, or something like that.Report
Are you sure that peanut allergies are limited to the poor? I’ve seen a huge uptick in them working exclusively in independent school communities. When I’ve attempted to better educate myself, I’ve learned that there is a great range of “peanut allergies” (some of which are better characterized as sensitivies) and not all of them are life-threatening, though they are often presented as such. One girl in my class this year was describe as having an environmental allergy to peanut butter (the type you cited as not being able to even be in the same room as the stuff), only to find out that she gets a slight rash if she ingests whole peanuts. HUGE difference.
There are also a number of parents who implement sensory diets or other similar things. These children don’t have allergies, but avoid certain foods because of their impact on behavior and other things. Results I’ve seen are a mixed back, in part because I don’t know that there is any one “sensory diet”.Report
Peanut allergies are not limited to the poor, but ASD diagnoses occur more often, relatively speaking, for the upper middle class. You’re definitely right though that there is a lot of nuance even with something like peanut allergies. But I still think we can draw the line at clear physiological effects.Report
ASD and many other diagnoses are far more common amongst the upper-middle and upper class. A question I wonder about: Does this point to overdiagnosis among the more well-off, underdiagnosis among the less well-off, or (my guess) both? Once we answer that, we can begin to investigate why.Report
That’s a very good question. If I had to guess, I’d say probably a little of both, since I have worked with high-functioning ASD kids who’ve shown me little to conclude that they are fundamentally “different” from the general population and I’m extrapolating from this anecdotal experience; and poorer people do indeed have access to fewer resources, especially in this country.
Another point, raised by Kimmi above, is that in a sense ASD classification is arbitrary. We think of a certain set of symptoms as a “disorder” when it may be – and it may have been historically – more appropriate to think of that set of behaviors as a polymorphism, or part of a broader definition of “normal” behavior.Report
I have my own suspicions about the root causes of autism. There are some hints out there, but like our little trivia contests around here, the researchers are all so many Carnac the Magnificents, looking at the sealed envelope and answering the questions inside.
Genetics does seem to play a role. Unlike other genetic diseases, where we can point to a location on a specific chromosome, autism’s etiology will only come into focus when we’ve got a better handle on embryology, especially the formation of the brain. It’s rather like the process of cooking: we can easily say bread is defective if it lacks salt or yeast or some other vital ingredient. It’s harder to point to the baker failing to let the bread rise sufficiently. For that we need more of the recipe than the list of ingredients. We need the entire recipe, directions and all.Report
Genetics seems to play a role in that genetics plays a role in everything. For some profoundly autistic patients, there are real physiological, neuroanatomical differences that explain behavior. It’s important to separate those kids from the high-functioning cases without physiological symptoms.Report
I’m not sure we can dilate the notion of genetics to include “everything”. Though we can separate these people on scales of dysfunction along separate vectors, there do seem to be a finite set of vectors in play. The fact that so many autism patients suffer from seizure disorders, I think it’s about a third of them, I’m not sure we’re doing autism research any favours by sorting them out along physiological lines.
Insofar as neurobiology is in its infancy, so’s neuroanatomy for all that, we’re quite literally looking at the PET scanners like an aircraft looking down at a forest fire from two miles up. Okay, so we have some clues from the cerebellum. Autism is almost always associated with hyper- or hypo-plasia of the cerebellum. From there, the whole problem of serotonin production and absorption appears. Serotonin is crucial to socialization. And there’s where the trail fades off into the weeds.
The worst thing you can do in the desert is to follow other tire tracks. Each brain forms its own connections and we’re absolutely clueless about how, below a certain resolution.Report
I’m not sure this is causally related, nobody is, but let me throw out something the neurobiologists are just now coming to terms with at a chemical level, the neuroglia. I spend a lot of time reading neurobiology because it’s so closely related to AI at many levels.
For years, nobody had a clue what they did. The word “glia” means glue but most people sorta looked at them like styrofoam peanuts the neurons could wiggle around in and form connections. Turns out the glia are the shepherds of the neurons, caring for them. A few of the glia, the astroglia, can actually turn into neurons in a pinch.
Let’s take the picture we all learned in biology of the endpoint of the neurons, those boutons almost-touching. As the neuron fires, the signal crosses from one neuron to the other over these tiny gaps, modulated by acetylcholine, cholinesterase, GABA and the like, thus arises our metaphors of the brain at work, first the telephone network, then the computer, et. al. It’s also how we’ve been viewing the artificial neuron in AI, beginning with the Hopfield Neuron.
But the glia are right there, too. They soak up those neurotransmitters, rather like little sponges. Doesn’t happen all at once, but if a neuron fires a fair bit, the glia will form their own connections, stable electrochemical connections lasting far longer than the neuron’s electrical pulse. They’re the witnesses. They also form connections between neurons otherwise unconnected.
To improve our understanding of the neuroanatomy of the fetal brain, we have to come to a more robust understanding the glia, for it’s those cells which guide the process. And we hardly know anything about either the glia or the process. I’m not an authority on any of this, I know AI. But I strongly suspect autism is this process gone awry. The big obstacle to progress on this front is the fact that we’ll have to work with developing embryos, which always gets certain folks’ bowels in a huge uproar.Report
If they put together a chart tracking when “certificates of participation” began being handed out and when autism first spiked, would they correlate? Would the next spike be when they started just giving trophies to friggin everybody?Report
[stifling my laughter]
[nodding my head]
[hoping no one I work with is noticing]
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Not to mention when they started awarding the presidency for being a guy you’d like to have a beer with.Report
A picture is worth a thousand words, so these videos should be worth 10,000 or so.
Am I Broken?
Faces of Autism
Re diagnoses. There is no doubt in my mind that what formerly was defined as “mental retardation” by the boatloads is today diagnosed as ASD. High capability autistics trapped in “institutions” for a lifetime must have been a particularly gruesome living hell.
I’ve had two Asberger syndrome employees. They may well be the best programmers alive, although they are quite difficult to manage. Perhaps as we move to the digital era, and viz Blaise’s comments above this is just nature attempting to evolve a solution. Recognize, evolution by definition have more cul de sacs than successes.Report
There was a perfectly normal, functional human being stuck in an upstate New York institution, simply because he only spoke a language that nobody else nearby spoke (apparently the other speaker had died, or somesuch). Took them like 20 years before they figured it out.Report
That’s nothing. One of Oliver Sacks patients was a woman who’d been insitutionalized because she only spoke Estonian. Now, admittedly Estonian is obscure, but really?Report
Heh. I had a guy like that on retainer. Knew more about Microsoft internals than was good for anybody. He couldn’t be brought on site, though I did have him down in the robotics lab a few times. Hygiene issues, personality issues, bore a startling resemblance to Comic Book Guy.
So I’d get in trouble with some hairy DLL, I’d write up a spec and send it to him. Had to make sure it was sent in small chunks because he’d literally start working and wouldn’t stop until he was done. Start taking calls from him every hour or so as he made progress on it.
Curiously, he didn’t do it for the money, though I paid him well enough. His family had come into money and lived in a huge mansion along Lake Michigan. He took a shine to my little son, then about seven, and the two of them would happily play, almost as equals.Report
I heard a story at the time of the 2008 summer Olympics that Usain Bolt’s father had taken him to the doctor when he was 7 or 8 because ” the boy just can’t stay still” the doctor an older man is rural Jamaica diagosed that there was nothing wrong with the boy. Take him home and let him run outside he recommended, which of course is easy of course to do in a rural area. The boy ran his way to a gold medals in the 100 and 200 meters races in the 2008 Olympics and will likely do so again this year.
I do understand that there are many children with genuine needs and that parents, doctors and other specialists do whatever they can to help.
But I wonder still if modern societies give children, especially boy children too little space in which to run and play and roam safely.
In we were running a zoo, the scientists would tell us how much space is enough space for an elephant or a bear, but can anybody tell us how much space is enough space for a boy ? And how much is too little?
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Too much space: Okay, boy, here’s a shotgun. Go out and scare off the black bear from our honey… (this is a true story.)
Too little space: “Head directly home. Do not leave home without your mother. You will finish your homework, and then you will go to sleep.”Report
“But I wonder still if modern societies give children, especially boy children too little space in which to run and play and roam safely.”
Hear, hear. As one of the few, the proud males in early education, a major cause of this is the lack of male teachers. When school policy and curriculum for our earliest learners is set almost exclusively by women, the developmental needs of boys (which are generally different than those of girls) are being ignored.Report
For what it’s worth, my wife has said this exact same thing. She firmly believes that when some problem or disorder hits the news, kids end up in that basket when they’re “close enough.” Not just because of parental motivations, but she thinks that doctors often look at that particular basket and stop looking when enough check-boxes are checked. She believes that, when we were growing up, a lot of kids with learning disabilities wrongly ended up with the ADHD tag. Not because they had ADHD, and not because the kids didn’t have problems, but because the learning frustrations that come with, say, a lighter form of dyslexia, can actually look like ADHD if ADHD is what you are specifically looking for.Report
You should ask people who have autism:
http://www.shiftjournal.com/
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