The ‘autism epidemic’ lives and dies on prevalence. The assumed prevalence in the US again came under the spotlight due to a CDC study being released that showed an increased rate of prevalence.
Autism is more common in the United States than anyone had estimated, affecting about one in every 150 children, the U.S. Centers for Disease Control and Prevention reported Thursday.
Pfft – that’s nothing. Us Brits can post a recent prevalence estimate of one in every 100 children and as Joseph shows a 1% prevalence is not really anything new either. What _is_ new is that this new study from the CDC is slowly beginning to approach the prevalence rate of around 1% reported in the UK, Canada, Germany, Sweden and, less strongly, Norway.
So when I say ‘increase in prevalence’ – and when these people refer to the same – are we all saying that the prevalence rate is actively increasing? No. No one (at least no one legitimate) is suggesting that there is an active increase in the amount of people who _are_ autistic. Rather the suggestion is that we continue to move (some countries faster than others) to an international autism prevalence of (as yet) some undiscovered figure, but one which is definitely over 1% where rates will probably plateau with minor tweaks up and down.
An interesting quote from the same interview:
“The older statistics always estimated 70 to 75 percent of kids with autism had cognitive impairment,” Rice said. “We found 33 to 62 percent.”
So, ask yourself, is this a cognitive impairment ‘anti-epidemic’? If you believe the changes in autism prevalence represent an epidemic, surely it must follow that these figures represent an ‘anti-epidemic’?
Or maybe, just maybe, this is an illustration of two things a) the changes in diagnostic criteria for autism as a whole and b) improved diagnosticians and diagnosing techniques.
As a further exercise and as I’ve been perseverating a tad on them of late, lets see what the changing face of prevalence can tell us about CDDS data as of 2005 (year end).
OK, as of 2005, the population of California was 36,132,147. The number of CDDS registrants as of 2005 was 29,424. This gives an autistic population in CA in 2005 of 0.08% according to CDDS.
We now have three potential prevalence rates to measure the accuracy of CDDS – do the CDDS numbers accurately match any of the three prevalence rates? Well, clearly the answer is no. At a rate of 1 in 166 (the ‘old’ prevalence rate) there should be an autistic population of 0.60% and using the ‘new’ 1 in 150 rate there should be an autistic population of 0.66% – and we already know that in Canada and parts of Europe the rate is 1%.
Let’s be clear here, CDDS is reporting between 8.1% and 13.5% (depending on the prevalence rate you go with) of all autism in California. That’s not so good. Especially when even _those_ figures have stopped supporting your hypothesis.
Left Brain Right Brain 
I heard one in a hundred too. Although it’s a ‘minority’ I’d love to have some statistics to compare e.g. one in every hundred children are bi-lingual / unable to ride a bike / belong to a parachute club……..
Cheers
Don’t know if this is the kind of stat you are interested in, but sadly, Mcewen, the parents of 2 in every 100 kids in California are in jail.
What are you Kev, a spin doctor? The ink was barely dry on the reports on this study before you got the comments out!
Anyway, if you dig a little in the data, you find out of the 12 states, the highest prevelence is my own wonderful Garden State of NJ! Now, I don’t think that it’s because we have so many toxic waste dumps, it’s because we were one of the better states at diagnosing and servicing children with autism. As a matter of fact, out of the 5 counties in the study, Ocean County, has the town that put autism on the map, so to speak, Brick Township. Essex County has the university, UMDNJ, which has some pretty serious autism research and services. We’re one of the leading states for services in general. All told, why wouldn’t we have a higher rate?
And guess what the rate was for NJ in both 2000 and 2002? Steady at right around 1%…
Bill
I just hasten to add to Richard’s statistics related comment that though I live in California and did when my children were minors… I have never been in jail. 😀
Bill,
Before Kev got this on the web, Rick Rollens had sent around an email with a news report about this. The report had spun the 1 in 150 thing as more bad news. I got one of the emails from Rollens. Lucky me.
The only bad news, in my mind, is that schools have to rethink their estimates of how much this is going to cost them. The Federal and State governments will also have to rethink estimates of how to help those ABOVE age 21! I wanted to put the spin on the NJ numbers before you get the ‘toxicologists’ commenting on the environment of NJ being so polluted, and show that the counties used for the studies are probably some of the most ‘geared up’ counties in the state (maybe the country) in diagnosing and providing services for ASD…
No real offense to Kev, This one’s spreading like wildfire, with spinning on every major news network as well.
Here’s the link to the CDC paper BTW:
Click to access AutismCommunityReport.pdf
Actually, all this does for me is put the final, definitive nail in the thimerosal-autism coffin. Because there’s no evidence prevalence of autism is decreasing yet thimerosal-containing vaccines are being used far less.
And the fact estimates continue to be revised upward speaks to the idea that we really don’t know – truly know – how many folks with ASD’s are out there. Thus, definitive claims that that the rise in autism is epidemic are silly.
And this CDC survey is based on school records, physician reports and so forth. It’s nowhere near where it would be if you do a whole population screening.
There is probably a cost to the increase, simply because different labels are attributed different needs.
_”No real offense to Kev,”_
None taken :o)
The thing is people think that with more kids getting the label that it will be more expensive, but the kids are here already and some of them are getting services already under a different label.
The same with adults, it’s not that there would suddenly be nearly a million adults needing to be cared for in care facilities and in day-programs. The more obvious are already being cared for to a great extent, not all, but many… and many are being “cared for” in an abusive way that still costs money that is being spent NOW.
One big upcoming expense might be that all the underemployed Asperger’s-like (or Temple-Grandin-like but without her job) people who are now living on the edges of society, and possibly homeless will get ALL UPPITY and ENTITLED-like and ask for help in getting and maintaining a jpb.
To me the big thing is to find out what is the best way to help these soon to be diagnosed 10 year olds and 15 year olds… not to just stick them in belated ABA programs or try to RDI them into some knd of normality.
In some ways it could be better to leave some autism spectrum people undiagnosed until the providers figure out what they need to provide, rather than drag an odd kid with dyspraxia and eye-contact issues and senstive hearing into some horrific “program” based on ancient bad ideas.
The kids in this new 1 in 150 survey are between *12* and *15* years old now, by the way, if I read the report correctly this is not a new tsunami thing. If the CDC is saying that they think that 1 in 150 is stable, then where’s the tsunami? The huge costs for these kids are already past aren’t they? How many of this bunch in this survey are already employed in high school? Maybe some of them have paper routes and that sort of job. This are not all “disaster” kids even if one chooses to think of an unemployable autistic as a disaster..
Seriously. It’s not as if everyone in that “1 in 150” is unable to take care of themselves. I bet you some of them are walking the halls of high schools “fully mainstreamed” and just looked at as weird or different.
As the prevalence of autism edges ever higher, I had a curious thought:
At what prevalence does a “behavioral disorder” become a “behavioral variation”?
Seriously, if a significant percentage of the population has a certain “mental disorder”, is it still a disorder or has it become simply a variant? A specific example might be “depression”, which is thought – by some sources – to affect over 30% of people in the Western world. Has the definition of depression been so altered that it now has become a normal variant?
If the definition of autism has “morphed” to where almost 1% of school children have it and third to two thirds do not have a congitive deficit, are we really looking at a developmental disorder?
Or, are we looking at a variation of “normal”?
Interesting question?
Prometheus.
I think what we are seeing is a shift from seeing SOME quirky/odd/stubborn/weird/unusual/rude/gifted/sensitive (or some combination of those) kids as having brains that do some of the same things that “kanner autistic” kids do .
Before there were THOSE rare utterly bizarre autistics, whom I, for one never thought I had anything in common with…, and then there were all the geeks, nerds, goobers and socially “off” people, who couldnt’ get a diagnosis if they wanted one.
It’s sort of like we never had the color “yellow” before, but now we do. Before we said a lemon was a pale orange and now we can see that obviously a ripe lemon is yellow, and saffron rice is also yellow, before we might have thought of it as a shade of green (because we had no word for yellow).
I remember the AV (audio visual) monitors? They were these impossibly geekie, loner types who migh have one best friend who was also a geeky loner type, they were basically Asperger’s guys, but we just saw them as too dumb to learn the social rules (I’m sure that’s what folks thought of me, too.) They were gifted with those paleo-electronic things, film projectors and overhead projectors, film strip projectors and tape recorders and the early video cassette players. Eventually all the AV monitor types will be diagnosed as having something, they are too abnormal not to get some kind of dx…
I guess it’s a process of the psych world slowing putting more and more of those at the edges of the bell curve into boxes and lableling them and explaining why the outliers do what they do.
That’s the thrust of “Unstrange Minds” I think, he’s saying the autistic people are familiar, they’ve been here all along but we didn’t know they were autistic, and some day we may get a different label and be seen differently again.
Thank you, Ms. Clark, for that wonderful description. One of my best friends was the “AV geek” in my school. Probably says something about me, I guess.
From what I see, autism is not the only psychiatric diagnosis that has “spread out” beyond its original bounds. I was at a conference a few months ago where someone was taling about the – and I’m not making this up – “Depression Epidemic”.
No, seriously.
It was only in the last few minutes of the presentation that it became apparent that, although the DSM IV diagnostic criteria for depresssion had not changed, the interpretation of those criteria had.
People who were still able to go to work, participate in family activities and otherwise function were being described as “severely depressed”. Twenty years ago, this would mean that they required hospitalization.
Now, before the advocates for the depressed attack, I’m not saying that people can’t be depressed and still hold a job. Not at all. But, if we’re going to call something an “epidemic”, perhaps we should try to compare apples to apples.
It is as if we were to take the number of people who contracted influenza (the real influenza) in 1996 and compare
it to the number of people who, in 2006, complained of “the flu” (i.e. a viral upper respiratory tract infection). Of course, we would come to the (completely erroneous) conclusion that we are facing an “epidemic” of “flu”.
Prometheus
How many of my friends from school would have qualified for this NLD label:
http://www.opednews.com/articles/genera_yvona_fa_070212_autism_lite_3f.htm