Social Networks and the Increase in Autism
August 5, 2007 by Kristina Chew, PhD
Filed under Epidemic, Health, Statistics
They’re doing it, and they’re doing, and they’re doing it, so what about us, why don’t we—–I heard about it the other day……..
Might thinking such as this be a reason to account for the increase in the prevalence rate of autism, which is now 1 in 150 in the US, and 1 in 94 among children in the state where I live, New Jersey? That is, after one parent hears that some other parent has had a child with XY and Z “issues” (not talking? obsessive about certain toys? shrieking on hearing certain sounds—high-pitched ones, perhaps?), does that parent then take the child to a specialist for an evaluation? After one person hears that someone she knows has certain traits and has been diagnosed with Asperger’s, might that person think, hmmm, I have some or rather a lot of the same traits, maybe I have that too…….
An August 5th New York Times article, Your Friends of Friends, discusses social networks: Scientists now “believe that social networks not only can spread diseases, like the common cold, but also may influence many types of behavior — negative and positive — which then affect an individual’s health, as well as a community’s.” The New York Times article cites the recently published study about how obesity may be “socially contagious” and “can spread from friend to friend much like a virus. When one person gains weight, close friends tend to gain weight, too.”
Peter Bearman, a social scientist at Columbia University, oversees the federal National Longitudinal Study of Adolescent Health, which follows tens of thousands of teenagers’ friendships—social networks—over several years. He and his colleagues are now studying autism:
The number of autistic children has increased rapidly in recent years, but it is not clear how much resulted from increased diagnosis and how much from an increase in the actual disease.
Dr. Bearman is studying how diagnoses of autism spread. When a child is diagnosed, friends of that child’s parents may wonder whether their child has autism as well, and have their child evaluated. Demand for autism evaluations would increase, and doctors and schools would become more sensitive to the disorder and more likely to suspect it. Schools would then provide services for the autistic children in the community, attracting families from other areas where autism was less common and where schools were not as prepared to help.
“There is an enormously important dynamic that draws people into a diagnostic maelstrom,” Dr. Bearman says. “Autism is real, but the epidemic very likely has a very important social network component.”
The more that is known about autism, the more one sees autism, or thinks that one might see autism in the people around one……. Could it be said that an epidemic of understanding about autism has contributed to what feels like an “epidemic” of autism?
Jeff Stimpson
Jill Cornfield
Interesting, so that is why I THINK my son is autistic.
I have a nephew who is classic Asperger’s (obsessed on vacuum cleaners as a 4 year old). But I’ll be damned if I’m going to tell his mother. It just made me neurotic when my sister-in-law told me. The kid is brilliant, although I am sure he is in for a hard life.
I know of many people who are “on the spectrum”, but I’ll be damned if I’m going to tell them. Heck, according to B-Cohen (forget the first part), I AM!! What a discovery!!
All those “weird kids” now have a label, if they want it.
Forgive me for intruding on this notion you’ve brought up…but we all know if autism is a spectrum, there are degrees. Where will it end?
There’s probably some truth to that. It does happen that there are parents who just don’t know a child is autistic, and even pediatricians miss it.
The problem with this hypothesis, however, is that there wasn’t some sort of explosion of social networks in the early 1990s, that gradually kept growing to this day. What did grow considerably all throughout the 1990s, in a similar manner to the way autism recognition grew, was the internet.
I wonder if Dr Bearman knows about Jick et al. (2005), who found a large spike in diagnoses of autism in 2-4yr old boys in the UK in 1999.
As Jick and colleagues point out, this spike followed the enormous amount of publicity surrounding Dr Wakefield’s work.
The availability heuristic is behind the ‘epidemic’, not mercury?
Wow!
Wonder how GR will cope with that wee bombshell!
And the internet has been a key tool for spreading “information” about autism……
There was a bombshell that caused an explosion of social networks in the early 90s that has caused the current confusion of today. It was the chaotic change in the diagnosis criteria from the DSM-III to the current DSM-IV criteria. The APA did noting more then create new patients to support it’s practitioners.
I like the phrasing of the end of the Bearman quote near the conclusion of Kristina’s post — “autism is real, but the epidemic very likely has a very important social network component.” I continue to think that there is value in both “sides” of the “increase in occurrence vs. increase in awareness” debate. Conversely, I’m suspicious of any characterization of autism (and btw, exasperated that there is a single word to describe such a multitude of human situations) that makes it entirely dependent on external effects (”my child was normal before xe received the MMR”) or entirely dependent on genetics (”vaccinations, external factors, etc. cannot possibly have any effect on the functioning/coping abilities of an autistic individual”).
I hope this hullabaloo will gradually lead to an acknowledgment that individuals who have particular genetic configurations are susceptible to the presence (or lack) of external effects, and that they should be given the resources to remove/obtain those effects in order to function to the degree they feel is most appropriate for themselves and their society. This all could include ABA, facilitated-communication devices, sensory integration therapy, supplements, medications…
I have no problem having such an outcome be considered the result of greater awareness of an issue that needs to be addressed rather than the increase of occurrences of that issue… in a sense, that feels to me like a matter of semantics (does something functionally exist for a society before we’re made aware of it?). I do think it’s important for both adults and children who need services to have those services provided to them, and it seems to me that projection of urgency is one of the few ways to get our society to respond. Granted, it is really problematic in my view that only a minority of opinions on the matter are aired by the most visible organization that claims to “speak” for autism.
Either way, though, we’re back to the question of medicalization: whether autism is a condition that is now better (?differently?) diagnosed or whether there has been an increase in occurrences (and I still wish and wait for a study that really quantifies the presence or lack of “autistic traits” in individuals over a span of time according to similar criteria, rather than the significantly different criteria of DSM-III and DSM-IV), are there useful medical or biomedical resources to be applied (whether chelation or supplements [like 5-HTP or melatonin] or medication to address perceived ailments [GI or otherwise]), and/or are there useful behavioral resources to be provided (ABA, SonRise, Floortime, etc), or should we proceed ad-hoc disregarding medical/behavioral resources as quackery at best, over-medicalization at worst? And if we decide that interventions can be useful, how can we decide which are legitimate, given that there is relatively little scientific proof for most anything out there, and yet a significant body of anecdotal report of positive results?
I know that anecdotal evidence is dismissed by many, and I’m sure that there is plenty of overstatement out there, but I really hesitate to inherently invalidate what parents report about their children’s response to particular therapies… it seems (to me) a small step between doing so and engaging in the kind of lack of respect/validation for individuals’ descriptions of their own health situations that I’ve seen documented so convincingly by neurodiversity advocates — “you can’t possibly be feeling that pain because I am a doctor and I *know* what it looks like when people feel that pain”.
I’m cherry-picking one phrase from your comment and meditating on the rest (with a view to preparing to teach book 1 of the Aeneid in some hours):
“exasperated that there is a single word to describe such a multitude of human situations”—
It seems more and more as if one ought to speak of “autisms.” I do see something underlying those “on the spectrum”—-of late, it has seemed (anecdotally, yes) to me that Charlie has more in common with other kids (asd, autistic, PDD-NOS, Asperger’s…..) as they all get older, regardless of how much language they have.
Tantae molis erat intellegere quid autism sit (couldn’t manage the meter).
Here is an excellent description of why there is a so-called ‘autism explosion’ from a MEDSCAPE Interview :
Medscape: What are the significant changes in diagnostic criteria for autism between 1980 and 1994?
Dr. Gernsbacher: Whereas the 1980 DSM-III entry required satisfying six mandatory criteria, the more recent 1994 DSM-IV offers 16 optional criteria, only half of which need to be met. Moreover, the severe phrasing of the 1980 mandatory criteria contrasts with the more inclusive phrasing of the 1994 optional criteria. For instance, to qualify for a diagnosis according to the 1980 criteria, an individual needed to exhibit ”a pervasive lack of responsiveness to other people.” In contrast, according to 1994 criteria, an individual must demonstrate only ”a lack of spontaneous seeking to share…. achievements with other people” and peer relationships less sophisticated than would be predicted by the individual’s developmental level. The 1980 mandatory criteria of ”gross deficits in language development” and ”if speech is present, peculiar speech patterns such as immediate and delayed echolalia, metaphorical language, pronominal reversal” were replaced by the 1994 options of difficulty ‘’sustain[ing] a conversation” or ”lack of varied …social imitative play.” ”Bizarre responses to various aspects of the environment” became ”persistent preoccupation with parts of objects.”
The concept of what autism is has not been broadened, it has been vastly expanded to the point of not being recognizeable at least according to DSM-III criteria.
Under DSM-III it was almost unheard of for a Down’s Syndrome child to qualify for a PDD diagnosis, now it commonplace.
The vastly expanded concept of autism began with Edward Ritvo who headed the APA’s study group charged with defining diagnostic criteria for PDD’s that resulted in DMS-III-R. The concept was further expanded in DSM-IV under the leadership of Fred Volkmar who heads that study group and will introduce the updates to the next DSM-IV revision.
There is an autism epidemic and I would describe it as the “Ritvo - Volkmar” virus.
Addendum. Anything posted after the following comment:
”Bizarre responses to various aspects of the environment” became ”persistent preoccupation with parts of objects.”
Are my interpretations of the interview, it looks unclear,
RAJ - thanks - this is a very helpful clarification of DSM III vs. IV criteria. It will be fascinating to see what DSM-V does with autism…
Kristina - how about “autismi multi illi et / terris iactati et alto” to describe the situation under which we all find ourselves?
(… had to memorize the first few lines of the _Aeneid_ in HS Latin class a few zillion years back… the hexameter is right in the example above, I think, but I’m not sure my grammar is correct…)
IMHO the “Ritvo - Volkmar” virus is killing the DSM’s credibility for determining diagnosis criteria.
the social networking hypothesis is interesting as is the comment of Joseph ‘no network explosion in the early 90’s, the autism spike following Wakefields publication certainly supports the hypothesis but the diagnostic changes of the 1980’s dont, niether does the discovery of Crystal meths in the 1980’s which has since been proven to contribute to low birthweight.