Autism News Beat

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Old news in a shiny package

December 20th, 2009 · 12 Comments · Critical thinking, Miseducation

Friday’s long-awaited release of the CDC’s autism prevalence report revealed a long-ignored, disturbing trend: our news and entertainment media still don’t get it.

”Autism affects about 1 in every 110 American children, a 57 percent increase over the last estimate in 2002,” said the Philadelphia Inquirer.

“The new data represent a 50% increase from two years ago, when the agency estimated the prevalence of the disorder at about 1 in 150 children,” says Thomas H. Maugh II at the LA Times blog.

”Autism rates have soared among Maricopa County children in the past five years, increasing 95 percent from 2002 to 2006, according to federal data released Friday,” says the Arizona Republic.

But there is nothing new and shocking about the fact that 1% of children have an autism spectrum disorder. In 1998, UK researchers Lorna Wing and David Potter wrote:

”Because we concentrated on the children with learning disabilities (IQ under 70) we saw very few with the pattern described by Asperger. We had to wait for the study by Christopher Gillberg in Gothenberg to find out how many children with IQ of 70 and above were also in the autistic spectrum. …combining the results of these two studies gave an overall prevalence rate for the whole autistic spectrum, including those with the most subtle manifestations, of 91 per 10,000 – nearly 1% of the general population.”

Got that? It’s been more than 10 years since two leading epidemiologists told the academic world that 1% children show symptoms of autism. So why is this news?

Part of the blame lies with the CDC’s press office, which told reporters in a Friday conference call that autism is an “urgent public health concern.” That’s like waving a doughnut in front of Homer Simpson. Anything that comes after is background noise to journalists angling for a narrative hook. Throw in the fact that most news outlets can’t afford real science writers, and you get reports like this:

”The rate of increase of autism disorders in children is 4 to 5 percent higher in boys than it is in girls.” *

That same Fox News report quoted a vaccine rejectionist at length, who shared his unique version of autism epidemiology:

 

(Mark) Blaxill said the CDC and National Institutes of Health need to develop a plan of action and work harder to find out why autism spectrum disorders are increasing at such a rapid rate.

”Autism was first identified in the 1940s,” said Blaxill, who has a 14-year-old daughter with autism. “Back then, 1 in 10,000 children were believed to have it and now 1 percent of our children have autism. And it’s not only improvements in the way we diagnose autism. … We’re outraged and we want more research.”

“We’re not anti-vaccination,” Blaxill said. “I support vaccines. … But we see what’s happened with the concern over Methicillin resistant Staphylococcus aureus and the overuse of antibiotics. One thing that’s changed dramatically over the years is the number of vaccinations we’re pumping into our kids. What we’re saying is, let’s investigate our vaccine program. Let’s evaluate safety.”

A real science writer would have caught Blaxill’s spin. First, there are no studies from the 1940s showing a 1:10,000 rate for autism. Second, comparing over-use of antibiotics to vaccines reveals a weak grasp of the science from the man who founded a group called SAFEMINDS, but we do appreciate the irony.

In fairness, counting and reporting cases of autism is tricky business, and the story does not easily lend itself to 300 words and a quotebar. There are three main difficulties with counting autism, according to researchers Wing and Potter, the prescient UK epidemiologists:

There is no medical test that can determine whether or not a person has autism. Diagnostic criteria are in terms of descriptions of behaviour. The earliest criteria, suggested by Leo Kanner, were very narrow. The current standard classification systems (ICD-10 and DSM-IV) are much wider, even for the sub-group of ‘childhood autism’ (or ‘autistic disorder’ in DSM-IV). Professionals differ in the way they apply the criteria, even if they are, theoretically, using one of the standard systems. Diagnoses may be recorded in different ways in case notes and centralised data collections.

Diagnostic terms tend to be used in different ways. Sometimes the term ‘autism’ is used to mean Kanner’s original group, sometimes it refers to the wider group called ‘childhood autism’ in ICD 10 and sometimes the whole autistic spectrum, including the individuals described by Asperger. In any case, there is a very great deal of overlap among all the sub-groups named in ICD-10 and DSM-IV and many individuals fit more than one diagnosis within the spectrum.

In epidemiological studies of prevalence, case finding methods vary. Those that involve seeing, assessing and diagnosing every individual in the sample to be examined will tend to find higher numbers than studies that rely on using case notes of individuals who have already been given the diagnosis in local clinics.

In short, any method that relies on medical and administrative records is bound to under-count, unless awareness is extremely good. As awareness improves, the under-reporting diminishes. The biennial CDC count relies on doctors and schools to identify children with autism. As awareness of the disorder grows, and more services become available, more children receive diagnoses, and the rate climbs.

Sullivan at LeftBrainRightBrain reports that a significant number of children categorized as autistic in the study hadn’t been given that diagnosis prior to the study.

”That’s worth repeating—about 23% of 8 year olds identified as autistic were mislabeled as non-autistic by their schools, parents and doctors,” says Sullivan. “That’s an interesting fact for those who claim that autism is easily identified.”

This is not a gloom and doom story, and without firm data that the autism rate is truly rising, there is little cause for alarm. Increased diagnoses means children who were previously ignored are being screened, diagnosed, and, one would hope, accommodated.

”homer_simpson”

* Fox News speak. In reality, the rate of autism is 4.5 times higher in boys than in girls.

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12 responses so far ↓

  • 1 Clay // Dec 20, 2009 at 10:36 pm

    Glad you added that asterisk, I was going to say, 4 or 5 percent is barely noticeable, statistically irrelevant. Faux News is an abomination.

  • 2 Kwombles // Dec 21, 2009 at 7:25 am

    Well done. In addition, since the vaccines-cause-autism camp have been railing that the numbers are 1 in 68 for at least the past year, why their outrage at the new number? I mean, I know of several of their regular commenters who frequently comment that the numbers are going to swell until it’s 1 in 10, and some who go even further and assert that everyone will be autistic. Seems to me they would be screaming that the CDC still isn’t counting it right, is still underreporting it.

    The CDC’s numbers are not news to anyone having anything to do with autism, regardless of whether they’re loony and believe it’s a global consipiracy to render an entire generation autistic or people who believe that more needs to be done to help autistics find acceptance and appropriate assistance so that they may have full, satisfying and autonomous lives.

  • 3 autblog // Dec 21, 2009 at 7:37 am

    One day, we’ll all be on the spectrum. Sounds like a country and western song. ; -)

  • 4 Rose // Dec 21, 2009 at 10:13 am

    You’d better believe that Autism Squeaks is hoping to cash in before it is determined autism is a way of being.

  • 5 Squillo // Dec 21, 2009 at 11:44 am

    Nicely done. And good catch on the Blaxill quote.

  • 6 livsparents // Dec 21, 2009 at 1:06 pm

    “One thing that’s changed dramatically over the years is the number of vaccinations we’re pumping into our kids”

    It never ceases to amaze me how wide Blaxil’s blinders are and how easily they can reduce the changes in disability reporting, awareness and education over the past 20 years into two words: ‘better diagnosis’. If you discourage people to report your kids through discrimination, ostracization and institutionalization; your numbers might tend to be close to zero. If you remove the stigmitization and provide incentives through better educational and therapeudic services (Mark, do the letters I.D.E.A. mean anything to you?), your numbers might just tend to skyrocket. Factor out some of the major social/educational/political changes that occurred in the exact same timeframe Mark, then get back to us…

  • 7 Liz Ditz // Dec 21, 2009 at 4:13 pm

    Thanks. I twittered this link a lot. Will continue to do so.

    The “autism is vaccine injury” crowd is now jumping up and down over Julie Gerberding’s new job.

    http://www.ageofautism.com/2009/12/julie-gerberding-former-cdc-director-to-become-president-of-mercks-vaccine-business.html

  • 8 Melody // Dec 21, 2009 at 6:13 pm

    We also need not forget the study to come out in the UK earlier this year. http://tinyurl.com/lx8auq 1% of all Adults have Autism as well.

  • 9 Liz Ditz // Dec 21, 2009 at 9:03 pm

    Oh, hurl.

    Here are Jim Carrey’s tweets, that are propagating like … well, rabbits. Or measles in the unvaccinated:

    http://twitter.com/JimCarrey/status/6916009710

    ” i’m not anti anything. I’m pro clean vaccines, pro fewer vaccines pro uncorrupted vaccine oversight! ;)}}”

    http://twitter.com/JimCarrey/status/6915239713

    Autism has risen 57% in 4 years. at present rate within 10 yrs we may lose the ability to have healthy kids! greed+apathy= extinction :)}}

    http://twitter.com/JimCarrey/status/6914591642

    Most agree now. Autism’s cause is partly ENVIRONMENTAL! VACCINES R ENVIRONMENTAL and the amount kids get has risen 260% since 1986! }%^[

    http://twitter.com/JimCarrey/status/6909687309

    Jenny educated herself in the midst of dire circumstances saving her own child and maybe millions of others. and u? :)}}

    http://twitter.com/JimCarrey/status/6906774948

    center 4 disease control. special vac panel found 2 be on other payroles. autism explodes, vaccines never considered. :)}}

    http://twitter.com/JimCarrey/status/6906279415

    Julie Gerberding, former head of the CDC while autism numbers EXPLODED, has been hired 2 head Merck’s 5billion$ VACCINE business. WTF %^(

  • 10 Hank // Dec 22, 2009 at 11:55 am

    So sorry the numbers don’t fit what you want. Guess what – the rise in autism is a reality.
    When will you accept it?

  • 11 autblog // Dec 22, 2009 at 12:24 pm

    My mind can be changed, but only with real evidence. Got any?

  • 12 Lee A. Wilkinson, PhD // Dec 25, 2009 at 12:05 pm

    Thanks for referencing and including comments from Lorna Wing. Dr. Wing’s seminal paper, “Asperger’s syndrome: A clinical account” introduced the terms Asperger syndrome and autistic triad to the clinical literature. It was her intention to stress that the syndrome was part of a “spectrum” of conditions and that there were no clear boundaries separating it from other autistic disorders. We now recognize that in practice, it is difficult to reliably distinguish between Asperger syndrome, autism, and other disorders on the spectrum . In fact, many clinicians and researchers are in agreement that Asperger syndrome is not a separate diagnostic entity, but rather high-functioning or a mild variant of autism.