The So-Called Autism Pandemic
There’s been plenty of debate about whether or not there is an epidemic of autism; about whether or not the increase in the prevalence rate of autism (now 1 in 150) is due to our being better able to diagnose and count cases of autism, or whether there is some actual something that can be pointed to that is actually causing more children to become autistic. Recently, I’ve noted mention of an “autism pandemic,” a term which strikes me as a not exactly subtle attempt to make the rise in the prevalence rate of autism seem to be a much more extreme, and scary, phenomenon than various autism organizations claim that it is.
According to the US Department of Health and Human Services, the definition of an epidemic is
disease outbreak in which some or many people in a community or region become infected with the same disease, either because the disease has been brought into the community by an outside source (such as a traveler infected with the disease, or an insect that carries the disease and infects people with its bite), or because a pathogen (a virus or bacteria) has changed in a way that either enables it to evade the immune system or has made it more virulent–that is, stronger and more aggressive. Some epidemics occur when an entirely new disease, such as AIDS, or a new version of an old disease, such as influenza, emerges.
We of course associate the word “epidemic” with disease and illness, but the ancient Greek root words of “epidemic” do not have such associations. Epi is a prefix meaning “among” or “upon” and demos is a noun meaning “people” (as in “democracy” = “people-power,” as kratos means “power”). The word “epidemic” is used by the ancient Greek medical writer Hippocrates; he uses the term “epidemic” to describe an illness that has spread “among a people”; that is widespread and common.
Pandemic—the pan is ancient for “all”—is defined as:
an epidemic that spreads throughout the world, as influenza did in 1918. Pandemics may involve an old disease, such as smallpox or the bubonic plague, or they may occur when a new disease or a new form of an old disease develops and spreads.
Thus, saying that something is an “epidemic” or a “pandemic” is matter of degree. Epidemics are widespread in general; pandemics are “throughout the world.”
Certainly—in part because of the internet, which makes it possible to read newspapers and websites and more from countries all around the world from one’s home computer—one reads about autism being everywhere throughout the whole wide world, and every day. The notion of autism awareness is going global: We now not only have Autism Awareness Month, we have World Autism Awareness Day. But whether this is the reason to declare an “autism pandemic” is not at all clear. But just because it has suddenly occurred to us in the West that “there’s autistic persons in Ghana, South Korea, Thailand, Dubai, India, and everywhere,” and that there are autism organizations worldwide, hardly means that there is now an “autism pandemic.” It does mean that we are much more aware that there is — and we shouldn’t be surprised — autism in all and any countries around the world, among peoples of all races and ethnicities (my own half-Chinese son, Charlie, being in this category).
The claim of an autism epi/pandemic resurfaced yet again with a sensational claim from journalist
Investigators could only find, “a total of 645 adults diagnosed with autistic spectrum disorders in Scotland,” the audit said, adding that, “we know that this is a significant underestimate of the total number of adults with autistic spectrum disorders from the comments received with these figures and also the large amount of missing data in this table.”
I would bet a billion pounds that there are many more than 645 adults with autism in Scotland. So yes, this is probably a significant underestimate.
But by how much? Is it possible that only one in every 110 adults with autism in Scotland is standing up and being counted?
Let’s look at the numbers. There are approximately 34,000 young people with autism in Scotland, born during the 16 years from 1987-2002. That is an average of 2,125 cases per birth cohort. But among older people, born during the 31 years between 1955 and 1986, there are only about 600 reported cases, or just over 19 cases a year.[Age of Autism]
Check out the graph and you’ll see that Kirby made a significant error. Sullivan wrote on Left Brain/Right Brain in Adults, Autism and Scotland on May 10th:
Based on this, he has determined that if the true incidence of autism is constant, about 1 in 110 of the adults are missing from the count.
OK, go back and click on that image for me. I know you skipped over it, but, go take a look at the bigger version.
Did you see it? Yep, the number is not 34,000, but 3,400 adults with autism in the Scottish survey. A factor of 10. Don’t worry if you missed it. Mr Kirby (who spent some time ‘analyzing’ the data) and at least 20 people who responded to his post missed it too.
At this point, I can hear the screams of “So what, that’s just a small mistake. You are trying to distract us all from the big picture.” Because, in the end, even though Mr. Kirby is off by a factor of 10 and there aren’t 100 times more kids than adults receiving services with an autism label in Scotland, there is a roughly factor of 10 difference in the administrative prevalence of autism.
A factor of 10 is still big. I’d argue it’s huge.
I have to say, if I’m balancing our checkbook, a factor of 10 is definitely huge: One more zero and the possibilities, while not infinite, are pleasant to contemplate (paying off the really large therapy bill; not wincing quite so much at the price of a gas…….). Mike Stanton at at Action for Autism also points out Kirby’s error, notes how “misleading” the figures are, and reviews the changes between the original Age of Autism article, and the revised article on the Huffington Post.
Stanton notes that he is “much more interested in the questions and the answers that will arise from the recently announced Audit of Adults with Autism” and also that “real data, fit for purpose is an all too rare occurrence in debates about autism.” Indeed yes, and especially for all that terms like “autism epidemic” and “autism pandemic” get thrown around, the fact is that there are a lot of autistic people of every age out there who have many needs. Some need, as The Scotsman notes, better school placements and teachers with real training in teaching autistic children; everyone needs more understanding that goes beyond basic “awareness.”
And perhaps, the more we know about autism, the more we can see it—-to the point that there seems to be so much autism out there that it is reaching epidemic, even pandemic proportions.
Seems, but that does not mean that there actually is an “epidemic” or a “pandemic”—-be careful about those numbers.
Tags: asd, asperger, autism, autism blog, david kirby, Epidemic, Health, health blog, pandemic, pdd-nos, Science, scotland, Statistics, Vaccines, weblogRelated Stories
POSTED IN: Adulthood, Africa, Asia, Autism Organizations, Classics, Education, Epidemic, Health, India, Korea, Middle East, Psychology, Race & Ethnicity, Ribbons, Statistics, Vaccines
22 opinions for The So-Called Autism Pandemic
andrea
May 12, 2008 at 9:33 am
Another thing we would have to ask is the annual birthrate. These numbers may be working on the assumption that roughly the same number of people are born each year. But are they?
andrea
Joseph
May 12, 2008 at 10:04 am
It’s true that in the past roughly 90% of autistics went undiagnosed with autism. See, for example, Nylander & Gillberg (2001). They screened adult clients of an outpatient psychiatric hospital, and found 19 “definite autistics” total. Only 2 of them had an existing diagnosis of autism. So much for “autism can’t be missed.” The most common diagnosis was schizophrenia (5), which is notable since it was more common than the diagnosis of autism itself.
mayfly
May 12, 2008 at 10:34 am
Scotland population is not booming.
1951 5,096,000
5,201,000 (1961 est)
5,234,000 (1971 est)
5,180,200 (1981 est)
5,083,000 (1991 est)
5,062,011 (2001 est)
5,116,900 (2006 est)
also checkout
http://en.wikipedia.org/wiki/Demographics_of_Scotland#Population_Projections
(Note the birthrate has increased since 2004.)
However, on inspection it doesn’t look like the change in autism rates can be attributed to a change in birth rates
mayfly
May 12, 2008 at 3:12 pm
Joseph. what is the journal? I’ve been unable to find the article by author.
Was the assessment based on the Nylander Questionnaire? If so what was the cutoff score.
In
Brief Report: Assessment of a Screening Tool for Autistic Spectrum Disorders in Adult Population
Michael Ferriter, Dougal Hare, Patricia Bendall, Christopher Cordess, Karon Elliot, Ingrid Hudson, Rachel Humpston, Jean Jones, Pauline Souflas and Michael Taylor
Journal of Autism and Developmental Disorders
Volume 31, Number 3 / June, 2001
In the above study 1305 were screened (96%) of the population 240 scored 5 or higher on the questionnaire. After further screening (case note analysis) this number was reduced to 31.
The article does not say whether any of the 31 had a previous diagnosis. But if none of them did, does that mean autism was missed 100% of the time? Or was it missed 2.3% of the time? (The 31 found to be autistic out of the population of 1305.)
In the study you quote the 19 autistics were out of a total population of?
Kristina Chew, PhD
May 12, 2008 at 3:32 pm
Given the situation with schools and services for autism described in The Scotsman article, the understanding and awareness of autism does not seem too great, at least in that area. So perhaps the statistics being low is not a surprising outcome.
Joseph
May 12, 2008 at 3:46 pm
mayfly: That would be Acta Psychiatrica Scandinavica. The screening tool is the ASDASQ.
Joseph
May 12, 2008 at 3:58 pm
Here’s another study which is like a general population screening with the AQ test, although that’s not really the purpose of the study. About 2% of the adults score above cut-off (this is replicated elsewhere). They call all high-scorers for an interview, but only 11 agree to be interviewed. Of the 11, 7 are found to meet threshold DSM-IV criteria. I take that to mean they could’ve been diagnosed with ASD.
There are some additional interesting details in the paper. None of the 7 were actually given diagnoses for 2 reasons: (1) A parent was not around to corroborate early development; (2) None of the 7 reported being unhappy with their personal situations. However, it was clear from self-reports that they had considerable difficulties normally associated with ASD as children.
I mention this paper because it highlights some of the difficulties that will be encountered by the UK researchers trying to ascertain the true prevalence of ASD in adults.
mayfly
May 12, 2008 at 4:43 pm
Joseph, thanks. Here’s the Abstract:
Objective: To estimate the prevalence of autism spectrum disorders (ASD) among adult psychiatric out-patients; to evaluate the efficacy of a new brief screening questionnaire (ASDASQ).
Method: 1323 adult psychiatric out-patients were screened by staff. Analysis of psychiatric records of patients (n=66) scoring high on the ASDASQ yielded 31 patients with a suspected ASD. Twenty-two of these patients were clinically examined. Three psychometric aspects of the questionnaire were studied.
Results: Seventeen patients were found by clinical examination to have an ASD. Since two patients scoring low on the ASDASQ were known to have an ASD, at least 19 patients in this population (1.4%) had a definite ASD. Seventeen of the ASD patients had been previously diagnosed with other psychiatric disorders, most frequently schizophrenia (n=5). Of patients attending a treatment centre for severe psychiatric disabilities (n=499), 3.2% had an ASD. The ASDASQ showed good reliability across and within raters. Internal consistency was excellent.
Conclusion: Adult psychiatric patients sometimes have undiagnosed autism spectrum disorders. The ASDASQ can be useful for screening.
M
May 12, 2008 at 7:50 pm
I think to be more alarmist, we need to find something larger than a pandemic.
What about a cosmoid galacto-transdemic? Woo! I don’t know. I’m thinking large here. The media eats it up when you super-size it.
Cliff
May 12, 2008 at 8:05 pm
How about the coming of the second apocalypse? That’s always really alarmist.
Cliff
Kristina Chew, PhD
May 12, 2008 at 8:46 pm
True: Who needs a “pandemic” when there’s already supposed to be a tsunami?
Kev
May 13, 2008 at 1:08 am
The autism tsunami came into being just after boxing day Tsunami in a not very tasteful piece of opportunism by Rick Rollens.
Whats the betting we see media descriptions an Autism Typhoon very, very soon?
liquid zeolite
May 13, 2008 at 1:20 pm
1-60 boys with Autism these days in NJ (latest numbers I believe) could be considered ..something, don’t you think? If not pandemic manybe a rash, outbreak, unacceptably high (UH for short)? How about an “UH” or autism?
Labels are nothing more or nothing less than a preexisting prejudice towards a subject, person, etc. I recognize the scare tactic angle as well. However, the CDC is also on a propaganda campaign of it’s own by saying there is a measles outbreak caused by un-vaccinated children. Given these stats below, I think it’s safe to say, the only UH we’ve had in disease has been Autism, not any infections disease:
“In the “USA” in 2005- Mumps 314 cases death none, Measles 66 cases, death none, Tetnus 27 cases, deaths none. Rubella cases 11, death none. polio cases 1, death none. Diptheria, 54 cases in the last 20 Years.”
MORE: Click on the links to the left to weigh the risk vs reward for all vaccines. “Facts and Information are a terrible thing to waste.” Mike
http://insidevaccines.com/wordpress/
Cliff
May 13, 2008 at 1:41 pm
“1-60 boys with Autism these days in NJ (latest numbers I believe) could be considered ..something, don’t you think? If not pandemic manybe a rash, outbreak, unacceptably high (UH for short)? How about an “UH” or autism?”
Be honest, it could be something, but I’m just inclined to think it is a deal of something of social construction rather than physical change, as have others here, and we’ve argued why. So by assuming the levels imply an actual recent change in the physical structure of these individuals where it wouldn’t have existed before, you’ve begging the question pretty badly.
Oh, and you begged the question again.
“Labels are nothing more or nothing less than a preexisting prejudice towards a subject, person, etc. I recognize the scare tactic angle as well. However, the CDC is also on a propaganda campaign of it’s own by saying there is a measles outbreak caused by un-vaccinated children. Given these stats below, I think it’s safe to say, the only UH we’ve had in disease has been Autism, not any infections disease:”
As far as I can tell, the CDC is basically making an argument based on the mathematical structures taken from herd immunity studies in regards to the rates of the diseases against the rates of vaccination. “Outbreak” is in terms of where there was only isolated incidents there are clusters of the diseases. It’s not to be confused with “epidemic”. And, in regards to propaganda, informing public health is kind of their job and, given that such things are pretty much all about influencing health action, that basically implies a propaganda system. Not exactly shocking.
“’In the “USA” in 2005- Mumps 314 cases death none, Measles 66 cases, death none, Tetnus 27 cases, deaths none. Rubella cases 11, death none. polio cases 1, death none. Diptheria, 54 cases in the last 20 Years.’”
That’s a really bad structure. First,the diseases become more potent by the process of being able to evolve through a number of individuals when given that space, and the vaccinations are already having an effect by their presence in constricting that space. The second is that, without vaccinations, we’re talking in very different number schematics then, say, 314. It’s just not a solid structure of comparison.
Cliff
Mike
May 13, 2008 at 2:57 pm
I know we’re not going to change things overnight with vaccines. That’s not in the cards given the nature of the beast. However, common sense would dictate that we do something, right? For starters, why not do away with the vaccines that are obviously ineffective and or not needed. Hepatitis B given to infants before they leave the hospital comes to mind:
“Hepatitis B is effectively a sexually transmitted disease in developed countries, but is endemic in other parts of the world such as Africa, or particularly China.”
“Hepatitis B vaccines were initially targeted at specific at risk groups, including healthcare workers and business travellers, and were made either from antigen from the plasma of infected donors or from antigen expressed in genetically modified organisms, such as yeast. They were (and remain) expensive, but have now been incorporated into global vaccination programs, including universal usage in most developed countries as the impact on incidence following targeted use was not great. The usage in developed countries can therefore subsidize that in developing countries, but only if valid and recognizable uses in wealthy markets exist.”
Risks:
From the Recombivax (Merck) package insert:
http://www.merck.com/product/usa/pi_circul…combivax_pi.pdf
Hypersensitivity
Anaphylaxis and symptoms of immediate hypersensitivity reactions including rash, pruritus, urticaria, edema, angioedema, dyspnea, chest discomfort, bronchial spasm, palpitation, or symptoms consistent with a hypotensive episode have been reported within the first few hours after vaccination.
An apparent hypersensitivity syndrome (serum-sickness-like) of delayed onset has been reported days to weeks after vaccination, including: arthralgia/arthritis (usually transient), fever, and dermatologic reactions such as urticaria, erythema multiforme, ecchymoses and erythema nodosum (see WARNINGS and
PRECAUTIONS).
Digestive System
Elevation of liver enzymes; constipation
Nervous System
Guillain-Barré Syndrome; multiple sclerosis; exacerbation of multiple sclerosis; myelitis including transverse myelitis; seizure; febrile seizure; peripheral neuropathy including Bell’s Palsy; radiculopathy; herpes zoster; migraine; muscle weakness; hypesthesia; encephalitis
Integumentary System
Stevens-Johnson Syndrome; alopecia; petechiae; eczema
Musculoskeletal System
Arthritis
Pain in extremity
Hematologic
Increased erythrocyte sedimentation rate; thrombocytopenia
Immune System
Systemic lupus erythematosus (SLE); lupus-like syndrome; vasculitis; polyarteritis nodosa
Psychiatric/Behavioral
Irritability; agitation; somnolence
Special Senses
Optic neuritis; tinnitus; conjunctivitis; visual disturbances
Cardiovascular System
Syncope; tachycardia.
Cliff
May 13, 2008 at 4:08 pm
“I know we’re not going to change things overnight with vaccines. That’s not in the cards given the nature of the beast. However, common sense would dictate that we do something, right? For starters, why not do away with the vaccines that are obviously ineffective and or not needed. Hepatitis B given to infants before they leave the hospital comes to mind:”
In terms of those kinds of issues, I have no problem weeding out vaccines that really aren’t functioning as they should and in a way which is really beneficial in a serious way. That would be good, to be sure.
Cliff
Emily
May 13, 2008 at 5:42 pm
“How about the coming of the second apocalypse? That’s always really alarmist.”
The Autisdammerung?
Kev
May 13, 2008 at 5:51 pm
I prefer The Autocopalypse
Cliff
May 13, 2008 at 7:20 pm
Can I use “Autocalypse”? That’s way too awesome.
Clif
Cliff
May 13, 2008 at 7:22 pm
Oh, wow, I mispelled my name. Clearly, someone’s been typing too much today about random stuff. Bah.
Cliff, to not to be confused with “Clif”, who happens to be the evil version of Cliff.
But Cliff loves “Autocalypse”, too.
Regan
May 13, 2008 at 8:00 pm
Or “Clif”, as in the bar :-).
Globally it would be nice to get some reliable prevalence data in hand, for some of the reasons that Mike Stanton and others have stated, and because there is so much speculation of the “didn’t exist before” type. Could or could not be true. Fact is, it’s still going to be messy depending on all those things of multiple diagnoses, criteria changes, uncertainties with retrospective data, missing counts, possibly ethics, etc., but recorded data would be nice.
I have a feeling anything that gets put out there will be pounced on and worried in one direction or another. Oh well. I hope that something constructive and tangible comes out of it.
TED
Jul 30, 2008 at 8:27 pm
No need to wonder anymore Roy Masters has discovered the cause of autism- Parents and Schools:
http://www.youtube.com/watch?v=ga5j4MSlKdw
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