December 19, 2013

Convergence in the meaning of "autism"

A perpetually scary question is: What if something is going increasingly wrong medically with large numbers of people and we just don't have the conceptual tools to notice the trend? About a decade ago it was common to worry about an increase in autism, but since then it seems like it has become accepted that we shouldn't worry about that because that's maybe just a matter of changing definitions on diagnosis and insurance forms.

But then again maybe the increase was real, and we just couldn't count it? It would be pretty horrifying if 50 years from now we realize that there was an autism epidemic and it had some simple cause that we could have fixed, but we didn't do anything about it because we couldn't deal with the methodological issues of agreeing upon a definition of autism. 

So, it's worth talking about the history of thinking about autism.

A British doctor writes:
'Autism' has changed meaning since I was at medical school. Then it was about a severe type of mental retardation - the kids did not talk, but rocked back and forth head banging etc; and seemed not to regard other people as people but as-if inanimate - did not react to loud noises etc. The autism bit was simply the lack of human reactions but mostly these kids were simply severely mentally handicapped, although they tended to look 'normal' and like their parents (not syndromal like Downs) .  
Nowadays, Asperger's syndrome has radically re-shaped the perception of autism - Asperger's was never mentioned 35 years ago but was revived by Uta Frith of London University and her disciples. And of course here we are talking about people with high intelligence, advanced language - but who are relatively uninterested in socializing, socially clumsy etc (probably a majority of the people, men, in maths, physics, etc).  
Both of these get called 'autistic' on the basis of a 'autistic spectrum' which supposedly connects them - but I don't see any connection whatsoever between a silent mentally handicapped kid head-banging in a cot year on year, and Sheldon Cooper from the Big Bang Theory...

Europeans were ahead of Americans in autism research.

My very vague impression is that the American conception of autism has followed the opposite course: that if you go back far enough, the American stereotype was of autistics as moderately functioning with perhaps some savant capabilities, but extremely annoying: e.g., Dustin Hoffman's Oscar-winning role 25 years ago in Barry Levinson's "Rain Man."

My recollection is that Hoffman's now-often criticized depiction was widely accepted in 1988 as realistic. (By the way, Hoffman's performance remains theatrically mesmerizing. Recently, I was walking past a TV showing "Rain Man" and found myself standing there several minutes later, still agog at Hoffman's bag of tricks.)

I may be totally wrong about this, but my impression is that in America since then the term "autism" has spread to all forms of non-cooperative mental retardation. A lot of this is driven by checkboxes on forms. If I had a severely difficult child and I heard I could now get more help if I checked the "autism" box, I definitely would, whether or not my child behaved like the 1980s American stereotype of an autistic.

So, Europeans started out with a picture in their heads of autism as severe retardation and have spread toward including Asperger's, while Americans started out with a picture in their heads of autism as severe Asperger's and have since spread toward including severe retardation.

I guess that's scientific progress.

40 comments:

Modern Abraham said...

From Dustin Hoffman to Billy Bob Thornton, I guess ("some people call it a kaiser blade, mmm-hhh.")

Anonymouse said...

Here's my autism theory:

1. I think we're inadvertently breeding more of the High IQ type of autistics. I'm a Mensan (so are my maternal grandparents). My husband is significantly smarter than I am. We both are well below average at reading social cues and hyper-literal. The odds of two people like us both existing in the same band of 150ish people and not being so closely related as to violate the incest taboo are slim. Instead, we met and will make babies. The odds of the same thing happening in successive generations are smaller. I was the only person I knew like me in my grade of 250. My husband and I met at that assortative mating device known as a selective liberal arts college. Our parents all met at selective schools too. My husband and I are both bright and have some personality traits that align closely with Asperger's but not enough to be really disordered. I would be totally unsurprised if we managed to have a kid or two with enough of those traits to tip over into proper disorder.

2. There's now an incentive to diagnose your kids early. You aren't supposed to test for giftedness before the age of 8 because IQ tests are normed against age and kids can be at really odd spots on the growth curve at age 3 and grow up to be totally normal adults. A 5 year old with the social skills of a 3 year old could probably be diagnosed as having autism, but he high grow up to be a fairly normal adult. But "he'll grow out of it" doesn't get the school funding for SpEd kids and doesn't get the parent social services that, if the kid doesn't grow out of it, might be important. Either way, the incentives for everyone are to diagnose.

3. I suspect autism is like fibromyalgia, in that it's a great catch-all. It's a diagnosis by elimination, so people with certain kinds of issues get thrown in there when there isn't anything more obvious to diagnose them with. As medical science gets better, we may be able to break these out into discrete disorders. After all, once my doctor discovered I had Lyme Disease, I no longer had fibromyalgia. They'd just put me there because they couldn't come up with any other explanation for why I was constantly achy and exhausted.

Anonymouse said...

Ugh. I forgot something. Television useage is also linked to autism. I would not be surprised to learn the increase in screen time, particularly in under fives, is part of the uptick. I think it might push someone with Autism-lite tendencies like me or my husband over the edge into Autism-proper.

james said...

An autism diagnosis is kryptonite; insurance companies do their best not to cover it. At least around here. Treatment is too uncertain and open-ended and the companies have an allergy to bleeding money.

Anonymous said...

I don't doubt that so-called high functioning autism is indeed a "disorder" of some type (or "neurological variance," if I wanted to phrase it politely), but it was always struck as preposterous that the Bill Gates type of "autism" is diagnostically related to kanner's (profound) autism. Someone is asleep at the wheel here, because it makes no sense. I hope one day these labels are cleaned up.

Anonymous said...

"I'm thinkin' I'll take some of these taters home with me, mmm-hhh."

Anonymous said...

Anonymous number 2 is spot-on. Autism is increasing both because of assortative mating among math, science and engineering types, and it's become a catch-all diagnosis that's popular because it gets your kid into a system that provides a lot of services.

It's also tremendously attractive as a diagnosis because it holds out hope to parents that there's an intact mind inside their child who can't or won't communicate with the outside world, rather than someone with a severely diminished consciousness.

I'm the parent of a child who was diagnosed as severely autistic early in life, yet now after a dozen years of intensive therapies tests as highly gifted and merely awkward and socially maladroit rather than catatonic. So I understand the desire of parents to hold out hope for their kids, no matter how damaged.

cthulhu said...

Well, Leo Kanner and Hans Asperger were working around the same time (the '30s), but Kanner was describing what is usually called low-functioning autism (the stereotypical no-interaction, rocking back and forth, hand flapping autistic), and Asperger was describing kids who could talk and exhibited traits associated with high "g", but were profoundly delayed socially - a couple of orders of magnitude beyond just inept. Both called their patients' condition "autism", but Kanner's patients became the exemplar for the condition.

Asperger's work was mostly forgotten until Frith and Tony Attwood brought it back, and the people similar to what Asperger described got tagged with the Asperger's Syndrome diagnosis. But in the late 1990s, it started getting a lot of exposure, and then became much overused. I've met plenty of kids that were truly hard-core Aspies, but there are also plenty of people who are said to have "mild Asperger's", which I think is a misuse of the term. All forms of autism are profound disorderings of one person's ability to relate normally to others, and should not be used to describe moderate deviations from the mean.

Anony Mouse said...

Anonymous 7:55

My best friend's brother is autistic. It took YEARS of his mother drilling him with facial expressions, but he's now reasonably functional. He works successfully in a quantitative field, and has enough people skills to manage that. He's like a computer, with a programmed, memorized response for almost any social instance. He's in Vancouver and white, but has assimilated pretty well with the local Chinese, I think in part because they are fairly formal and rigid. He's been dating with some degree of success, mostly Asian girls. He's never going to run a company, but he'll make a reasonably successful life as a number-cruncher and seems set to marry a traditional girl with relatively low expectations for emotional involvement and affection from her husband. But if his father hadn't been wealthy enough that his mother could quit her job to make remediating his issues her constant vocation, he'd have been screwed and would be in menial work at best. I doubt there's enough money to pay someone to do that.

Anonymous said...

Some things that link children across the autism spectrum are the the various stereotypical behaviors they display at a young age, like toe walking, lining things up, language problems like late acquisition of speech, pronoun reversal and echolalia,and sensory issues like hypersensitivity to certain sounds or textures. Although many people have suggested that different types of autism might have different causes, the diagnosis is usually made, (as far as I know),on the basis of behaviors, and children with very different outcome possibilities can look quite similar in early childhood. Even later on, its not hard to believe that the way aspergers kids perseverate on their favorite subjects is linked to the limited, repetetive play that more severely autistic kids engage in.

Anonymous said...

Anonymous number 2 is spot-on. Autism is increasing both because of assortative mating among math, science and engineering types,

And assortative mating is an indirect result of women in the workforce.

wren said...

I enjoyed Temple Grandin's book "The Autistic Brain."

She devoted chapters to showing scans of her brain compared to "normal" brains and speculating about the differences. It seems one of her hobbies is to keep up with the latest brain imaging technology and get her head scanned with the latest machines as soon as she can. They are improving dramatically, and I think this will be the way to go for diagnoses within a decade or so.

Also, I agree with anonymouse about universities being assortative mating facilitators and screen watching molding the developing brain in that direction.

I feel that I am a product of both.

wren said...

From the description of Grandin's book:

"Weaving her own experience with remarkable new discoveries, Grandin introduces the neuroimaging advances and genetic research that link brain science to behavior, even sharing her own brain scan to show us which anomalies might explain common symptoms. We meet the scientists and self-advocates who are exploring innovative theories of what causes autism and how we can diagnose and best treat it."

Reading it, I got the feeling that she will soon be stepping into dangerous territory, but thought, "who better than an autistic to point the obvious out to us?"

Reg Cæsar said...

Careful what you say here, lest the SP£C brand you an autist.

Reg Cæsar said...

Careful what you say here, lest the SP£C brand you an autist.

Reg Cæsar said...

Careful what you say here, lest the SP£C brand you an autist.

Anony Mouse said...

That reminds me. Has anyone else been following the neurodiversity movement? They're autistics who believe they have a different way of being, not a disease and should be treated accordingly. On the one hand, I think they are choosing to ignore all the people who share their diagnosis who will never speak or use a toilet. On the other hand, I have found it very upsetting when people have treated me as defective or damaged because my brain is so different than most women's. I'm aware that today kids like me are labeled autistic and get therapy , which baffles me because I'm a high functioning adult without either. But id hate to be lumped in with the diaper wearing crowd myself.

TGGP said...

Elvis was in an even earlier movie with an autistic character, "Change of Habit". I haven't seen it (or any Elvis movie, for that matter) myself, but apparently the autism is cured in a single session. On the other hand, it's a non-verbal autism, so closer to the old limey conception.

agnostic said...

There could be an environmental amplification of genotypic differences during periods of greater social isolation, like today.

I wonder if the people who now have the not-so-severe form of Autism Spectrum Disorders would have been that way if they'd grown up in the '70s or '80s, when there was way more peer socialization than in these days.

Anecdotal evidence -- and probably some scholarly evidence that I'm not going to look into -- suggests that by giving the ASD kids lots of practice early on, and constantly, with reading facial expressions, etc., they might turn out not so bad.

If practice makes perfect, then kids will suffer worse symptoms when they get less and less practice interacting with others. I.e., during a period of cocooning and helicopter parenting.

The same spectrum of genotypes that found themselves being affected by the social environment of the 1970s and '80s got, say, a 1 S.D. boost to their social normality trait.

Nowadays, those genotypes enjoy no such environmental boost, so a larger a larger fraction of them are expressed as some level of ASD.

Even the genotypically normal majority of the population feels more autistic these days than 20 or 30 years ago, so why wouldn't this environmental effect strike the genotypically autistic as well?

Anonymous said...

I wonder if the people who now have the not-so-severe form of Autism Spectrum Disorders would have been that way if they'd grown up in the '70s or '80s, when there was way more peer socialization than in these days.

I grew up in the 70s and 80s. It was HELL for anyone with ANY form of neuroatypicality. The adults didn't know anything about it other than "bad". The peer bullies sure knew about it. I suppose that someone with an extremely mild ASD might adapt, at the price of hating himself the rest of his life.

Anecdotal evidence -- and probably some scholarly evidence that I'm not going to look into -- suggests that by giving the ASD kids lots of practice early on, and constantly, with reading facial expressions, etc., they might turn out not so bad.

You forget that ASD kids don't learn such things from being thrown into shark tanks. They need everything spelled out to them by knowledgeable, tolerant, empathic adults.

Anonymous said...

That reminds me. Has anyone else been following the neurodiversity movement?

I am the neurodiversity movement.

They're autistics who believe they have a different way of being, not a disease and should be treated accordingly. On the one hand, I think they are choosing to ignore all the people who share their diagnosis who will never speak or use a toilet.

Very good point.

On the other hand, I have found it very upsetting when people have treated me as defective or damaged because my brain is so different than most women's.

I think the real dividing line is when the problem is not so much one's own behavior but the behavior of others. I believe it was F.D. Roosevelt who said something like the greatest disability is the attitude of others toward the disabled. That is doubly true when it comes to Aspergers.

It's also one thing to be treated as "defective or damaged", and another to be treated as morally bad. This is very common if one's IQ is above average.

DoJ said...

I'm definitely planning to minimize computer screen exposure for my future kids until the recognized autism-spectrum window has closed. I am curious what policy other assortatively mated parents have followed, or are planning to follow, on this.

dearieme said...

"I guess that's scientific progress." Heavy-handed sarcasm is always welcome.

Anonymous said...

Don't wait too long to have those future children. Icelandic study shows incidence of autism increases as father's age increases. Roughly 4 times more new mutations in sperm than eggs due to frequent sperm division. Iceland keeps pretty thorough genetic info on their people, so they're better at tracking mutations in offspring that neither parent has. New mutations increase with paternal age: at age 36, twice as many as at age 20; at 70, eight times more.
Of course, assortive mating with 2 high demand stem careers probably leads to delaying the mating (literally).
http://www.nature.com/news/fathers-bequeath-more-mutations-as-they-age-1.11247

neil craig said...

I suspect that autism may be increasing simply because the high IQ type at least, isn't beaten out of them. In the Victorian era they would have been beaten; in the middle ages, left to starve.

However I am not worried about this. Nowadays society doesn't need ploughboys or industrial workers but the next Newton (who would be a bit Aspergish today), we do have room for.

Anonymous said...

"I'm definitely planning to minimize computer screen exposure for my future kids until the recognized autism-spectrum window has closed. I am curious what policy other assortatively mated parents have followed, or are planning to follow, on this."

I advise this. Being an IT person I thought my kids, growing up around computers, would want to know how they worked etc. Not a bit of curiosity - just (when younger) computer games and now endless Facebook and Twitter updates. Could be white man's magic for all they care.

A wiser friend (Indian origin) who also worked in IT kept computers out of her house until the kids were teens and needed access for school work. They're more knowledgeable than mine, because they read more books.

agnostic said...

"I grew up in the 70s and 80s. It was HELL for anyone with ANY form of neuroatypicality."

Perhaps, but that's a separate dimension -- self-esteem and acceptance.

We're just talking about whether you'd show profound symptoms of an ASD, bad enough that adults would start worrying about an epidemic. My hunch is that those who grew up back then would have been the butt of jokes more often than now, but would also have developed a more normal social sense by age 20.

"You forget that ASD kids don't learn such things from being thrown into shark tanks. They need everything spelled out to them by knowledgeable, tolerant, empathic adults."

Sure, but they don't seem to be getting much of the latter these days either. Unless the family is wealthy, the mother willing to devote a full-time unpaid job to training the child, and so on. That's a very small fraction of ASD children.

In the '70s and '80s, those kids would've had major interaction time with their peers. It would've made them uncomfortable, awkward, and the butt of jokes, but it still seems to have prevented them from developing serious levels of ASD.

I just don't remember the older Gen X kids having a lot of guys who we'd today call awkward, sperg, etc. There might have been only a handful in the entire high school, and they were singled out because they were so rare. Now, those serious symptoms are more common, so they form an entire clique or sub-culture within the school.

Which is important -- less severe symptoms or higher self-esteem?

Monroe Ficus said...

My brother is what they call classical autism, which to seems like a combination of mental retardation and autism. I used to work with the mentally retarded/disabled and remember seeing how the younger kids labeled "autistic" were more mentally ill than retarded; Another thought of mine is the whole older mothers theory: it pisses my mother off when I mention it, but it's gotta be a factor. my family genome is also pretty fucked up, with a great deal of mental illness on my father's side. I think my mother being older was a factor in my brother's retardation, and my father's family history of mental illness being a factor in his autism. I have a few autistic tendencies, but i assume most of the people reading these blogs probably have the same nerdy trains of thought.

Dutch Boy said...

Autism refers to a spectrum of symptoms (hence ASD -autism spectrum disorder); at one end you have the mentally retarded head bangers, on the other the Aspergers types. There has been a major increase in both over the last 20-25 years. Such an increase bespeaks an environmental cause but our health poohbahs insist on spending billions researching genetic causes. Some of them have even convinced themselves that autistics in large numbers have always been with us, we just didn't notice them before(a ludicrous assertion for anyone familiar with autism - just how do you not notice the ten-year-old in diapers who cannot speak and spends his time flapping his hands, banging his head or lining up toys in precise lines?

pat said...

Fibromyalgia is becoming more common, partly because it is a sure fire way to get a prescription for medical marijuana. It is all based on personal reports and you don't even have to wear a collar, like a so-called whiplash 'victim'.

I suspect autism diagnoses may also have hidden incentives.

Dustin Hoffman got an Oscar for playing a dummy. Jeff Bridges got an Oscar nomination for playing a space alien who acted much the same way.

Does it really take more acting talent to play stupid? Almost no actors are successful at playing smart. I would think going the other way would be easier.

You were fascinated by Hoffman's performance - but was that from him or from you? There is a TV series - 'Alphas - where one of the main characters is autistic. He is fascinating to watch and very amusing, but I don't think his autism act requires much acting skill.

Or maybe I'm wrong?

Albertosaurus

Anonymous said...

Has anyone though of cutting out fluoride, vaccines, and junk food rather than computers for their kids?

Dave Pinsen said...

William Hurt did a surprisingly good job of playing Richard Feynman in the recent TV movie about the investigation into the Challenger disaster. Come to think of it, I shouldn't have been surprised. He was also good handling Chayefsky's dialog as the neuroscientist in Altered States in the early 1980s.

Charlesz Martel said...

Read the book "The Crazy Makers". Also "Neurotoxins" by Blalock.

DoJ said...

Has anyone though of cutting out fluoride, vaccines, and junk food rather than computers for their kids?

While the junk food part is a good idea anyway, this isn't related to the observed higher frequency of autism-spectrum kids in places like Silicon Valley. (And vaccines/water fluoridation were both ubiquitous for decades before the recent increased in observed ASD.) There's something more specific going on that demands precautionary measures from two-nerd couples.

Gottlieb said...

https://medium.com/matter/70c3d64ff221

Autism and asperger part of the same extreme condition, which is popularly labeled in one box only. However, the call asperger syndrome is near the border of functionality, I'd say more, is exactly in the middle of the border, where some people can not be functional while others can be. If there is a frontier full cognitive functionality in modern societies (where the lower limit is an IQ around 105-107) then I presuppose that there must also be the border of functionality, which in a certain extreme or discrepant condition, the positive traits and advantageous condition are prevalent in relation to negative traits.
Asperger's is to classic autism in the same ratio as schizotypy is to schizophrenia.
The asperger is a mix of neurotypical traits with autistic traits, but without a predominance of a relative to one another.
We, ''aspergoid'' people, we present this same mélange but with a slightly predominance of neurotypical traits than autistic traits.
However, this predominance is not considerable.
Until adulthood, foolishly (or not) I always considered the mutations as good evolutionary processes of species. And indeed, mutations are evolution itself, can not evolve without they occur.
Looking for people with asperger and more functional derivatives, I think it would be nice if in the future more of this type continue to exist, not only because of their great cognitive abilities but also by the fact that many tend to develop a great awareness. If any evolution has a cost...

The first time I read superficially about asperger syndrome, I identified immediately with the diagnosis, at least with some characteristics.
However, I do not have the most extreme traits or expressions of traits (exaggerated form), essential for diagnosis, which disqualifies me as probable carrying full features of the syndrome. What is interesting is that I share with several other non-neurological features such as psoriasis, left-handedness, dandruff, weird teeth (not the Easter bunny style), I am slightly lower than average, i'm stutter (less than my childhood),I have loose joints...

http://www.rdos.net/sv/neanderoid.htm

Gottlieb said...

I do not buy this idea that environmental causes (simply and only) are causing the increase in autism cases. Again, for an environmental cause really happen without any previous or negligible genetic cause, then it is necessary that all the people who are in the environment suffer the same symptoms. It's the same as saying that poor diet will result in deterioration of intelligence in some people. Yes, part of the population with particular genes or lack thereof, may suffer considerably more negative with other environmental causes. The deal is that there are people who are more prone to having offspring affected with autism. Even though in fact occurs the increased risk of autism in older parents, it does not happen only by age but also by the characteristics of biological parents. The majority of older fathers do not have any children with neuro-debilitating condition (at least to early 40's).
Therefore, the increase of urban population in Western autism can be caused by genetic susceptibility part of this population, the complex weatherproof of the major cities. If in autism and more specifically in high-functioning autism and asperger, happens a cost reduction for multitasking, the urban environment requires, for cognitive fixation, then it may be that cities are not the best environment for them, the same way that churches are not the best environment for atheists.
Many children are born with autism could have been born 'normal' or without the expression of neuro-debilitating condition if surrounding environmental factors had not intervened.
Looks like syndrome gene x, may be involved not only in relation to autism, but for most neuro-condition and also discrepant with high intelligence. High intelligence seems to be recessive and multiform or polymorphic.
If high intelligence manifests in Ashkenazi by genetic costs for a portion of the population, then the same should happen in other human populations, but less intensely and with the interaction of different phenotypes.
The neuro-discrepant conditions are the essence of ethnic-cultural variation of the human being.

neil craig said...

If, as I suspect, high IQ autism and asbergers is simply becoming very focussed on one issue then it is potentially a massive boon for society.

Inherent in a more advanced society is more specialisation (see Adam Smith and the story of the pin). We are sufficiently advanced we can afford to have people specialising on quantum physics & if we want to progress we must afford it moreso.

Stephen Hawking is not autistic but physically he is in an analgous situation - had he not been limited he would have spent more time on normal life, to the considerable disbenefit of the human race.

pat said...

Dave Pinsen said...
William Hurt did a surprisingly good job of playing Richard Feynman in the recent TV movie about the investigation into the Challenger disaster.

You are of course entitled to your own opinion. The Feynman I see in my head when I read Feynman is not William Hurt.

William Hurt is for me forever Arkady Renko.

Albertosaurus

abcdefgh said...

I'm surprised older mothers has only been mentioned once. It seems to be the elephant in the room.

Attofoxy said...

You say that the diagnosis of autism has broadened from severely retarded to include high-functioning individuals. This is correct: the DSM criteria for autism has expanded considerably from the term's origins in juvenile schizophrenia. You also talk about people 'ticking boxes to get help. This is also true in some areas: if there is help available for autism, then it makes sense for parents and doctors to include borderline cases.

Both these elements (relaxed diagnostic criteria and 'aid bias') are fairly well understood as the reason behind the apparent explosion in autism diagnoses. Both elements would lead to less severe cases being included.

And yet you draw the opposite conclusion, that autism has come to be increased associated with severe retardation. The vast majority of people who have some experience with real autism (NOT Rain Man!) do not see autism as severe retardation.