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Autism Speaks and the epidemic of self interest

March 30th, 2012 · 9 Comments · Serious overreach

One out of every 88 children in the US meets the criteria for an autism diagnosis, according to data released Thursday by the CDC. Two years ago the figure was 1:110. Two years before that 1:150.

It’s reasonable to ask what these numbers mean. Are more persons being affected by autism than before, or are more being detected? Has autism always been with us at the numbers we see today, or is there actually more of it?

It’s a complicated question, and one that will be answered with data and research. But Autism Speaks, the largest autism advocacy organization in the world, prefers the dictionary.

“According to Merriam Webster’s Dictionary, the definition of epidemic is “excessively prevalent, affecting a disproportionately large number of individuals within a population at the same time,” AS President Mark Roithmayr told reporters during a CDC conference call.

The epidemiologists who labored to produce this study would disagree, and Roithmayr knows better. But as president of the largest and best funded autism advocacy group in the world, it’s his job to keep the public alarmed. Autism Speaks has poured more than $173 million into scientific research and fellowships since 2005. Nothing attracts donors like an emergency.

“Exploiting statistics for financial gain is the name of the game, after all, and it’s what they do–the more they get the more they give to research,” writes Kim Wombles at Science 2.0.  “Imagine if that call for money was about helping actual families now. Talking about family devastation and then asking for research money rather than money to help actual families right now misses the mark by a wide margin.”

Roithmayr’s lieutenants know the game. Peter Bell, AS’s vice president of programs, recently told a congressional appropriations subcommittee that “Twenty years ago, the experts estimated that one of every 2,500 children had autism,” and “Increasingly we hear the work epidemic associated with autism in America.”

Bell also knows better. Prevalence amongst 6 year olds in 1992 in the US was 19.1 in 10,000. That was the first year that collecting data on autism was mandated by statute.  Bell’s 4:10,000 rate was reported in 1966, and then only for a small segment of the autism spectrum.

Autism Speaks head boffin, Dr. Geraldine Dawson, repeated her organization’s epidemic talking point on the Today Show just this morning. “We now have an epidemic of autism in the United States,” she said, “It’s very important that we have a national plan to address this public health crisis.”

Exploiting statistics for financial gain is the name of the game, after all, and it’s what they do–the more they get the more they give to research. Imagine if that call for money was about helping actual families now. Talking about family devastation and then asking for research money rather than money to help actual families right now misses the mark by a wide margin.

But facts and details only slow down the Autism Speaks fundraising machine. The truth about the new prevalence numbers may not be alarming, but it does reveal much about how autism is identified and tallied.

Counting autistic children is costly and time consuming. The CDC collects data from existing records in 14 sites (Alabama, Arizona, Arkansas, Colorado, Florida, Georgia, Maryland, Missouri, New Jersey, North Carolina, Pennsylvania, South Carolina, Utah and Wisconsin) to identify eight-year-old children with an actual autism diagnosis. Then the researchers comb over those same records looking for language that suggests a development disorder –  ”repetitive and stereotyped behaviors,” “poor eye gaze,” and “delayed speech” – are examples.

In the latest survey, 21% of the children identified with an autism spectrum disorder had no such diagnosis before the survey. In the 2006 cohort, that number was 23%.

In other words, 1:88 children is not diagnosed with autism. In the recent survey, it’s more like 1:115. This speaks to a large, undiagnosed population whose needs are not being met.

A more exhaustive 2011 study from South Korea, funded by Autism Speaks, used standardized diagnostic instruments for children who screened positive and reported a prevalence 1 in 38 children. Of that number, two-thirds had never received a diagnosis of autism spectrum disorder (ASD).

With all due respect to Merriam Webster’s Dictionary, this is not what an epidemic looks like.

Instead of inventing definitions and misleading congress, responsible advocacy groups focus on meeting needs. “These are not just numbers, these are real people with real needs” said Alison Singer, president of the Autism Science Foundation.  “We have to focus on building the infrastructure to provide education and services to all of these people and their families.”




9 responses so far ↓

  • 1 Venna // May 18, 2012 at 10:13 am

    I find it interesting that there are increasing numbers of adults now being diagnosed with autism, yet in childhood they were considered neurotypical. And we aren’t talking adults who are just becoming adults, but people in their mid to late 30′s, 40′s and even 50′s just now being diagnosed and their families finally getting the answers as to why their child was so weird or challenging.

    There is a strong possibility that autism didn’t exist in the numbers that it does today, and I believe many of the factors that contribute to the rise in cases stems from a rise in population as well as older parents as opposed to the age of parents say one and two generations ago. Science has shown us parental age is a significant contributing factor to the incidence of autism.

    But if autism didn’t exist 20 years ago, why are there so many adults now being found to be on the spectrum? I think we are all agreed that ASD is a life long condition, if a person has it, they have always had it, even if they are 35 years old when they are diagnosed. It isn’t something that just cropped up suddenly, it’s always been there. That being the case, I think the epidemic that people keep going on about is non-existent because autism has always been there, it just hasn’t been as recognized as it is now. Everything should be taken into perspective in order to see the whole truth and magnitude of the situation.

  • 2 autblog // May 20, 2012 at 7:23 pm

    “But if autism didn’t exist 20 years ago..”

    But it did. The CDC found that the administrative prevalence of ASDs was about 19:10,000 in 1992.

  • 3 Venna // May 21, 2012 at 12:17 am

    I was using an exaggerated term. As many who follow the ‘vaccines cause autism’ line believe though, and often state, it didn’t exist (I keep forgetting that 20 years ago wasn’t as long ago as I keep thinking and adults who are in their 30s and 40s now would not have been in elementary school 20 years ago lol). Of course it existed, but because the diagnostic criteria was vastly different many who were thought normal are now being found autistic and only those who were severely or profoundly autistic were diagnosed. Do we have any actual figures on the number of new adult cases of ASD? Have we been able to compare them to new cases in children now? I personally, would be interested to see that comparison. How much more common was it then really then the numbers showed us at the time?

  • 4 autblog // May 21, 2012 at 4:36 am

    There was a survey in England a couple years ago that found 1:100 among adults. I hear Autism Speaks will be funding a similar study in the US, but that could be years away.

  • 5 Venna // May 21, 2012 at 8:37 am

    Interesting. If that is true here as well then it would I think blow the entire epidemic theory out of the water. Possibly even put a huge dent into the vaccines cause autism junk. That would show autism has always been as prevalent as it is today, we just weren’t as sophisticated as we are now in the diagnostic process. Do you have a link to that study? I’d love to read it.

  • 6 autblog // May 21, 2012 at 11:46 am

    Here’s a link to a news story:

    Counting adults with ASDs is much more demanding, for obvious reasons. The CDC surveys of 8 yr olds look at school records, and count children who have been diagnosed already. Some of those diagnoses are from a school nurse, social worker, school psych, etc. In some cases the child has never been diagnosed, but the language that teachers and others use to describe the child’s behavior suggests an ASD (unable to attend to tasks, repetitive behaviors, does not make friends easily, etc.)

    Most children with an ASD have a less severe form of the disorder, and will gain some level of independence. The GenRes talking point that says “autism can be spotted a mile away” therefore few adults have it has no basis in reality.

  • 7 Venna // May 21, 2012 at 1:33 pm

    Most adults who have an ASD but are not diagnosed, have struggled through life attempting to mask the fact that they ‘don’t fit in’. Many of them suffer from panic disorders, bi polar disorder, aggorophobia and general anxiety because of the high levels of stress and just the toll it takes for them to try and integrate into society. We have believed for a couple of years now, since my son was diagnosed, that his father, my partner may also fall somewhere on the spectrum. He has developed coping mechanisms to mask his confusion dealing with people and over the years it has degenerated into a great fear of leaving the house. It’s highly possible, many of the adults that suffer from certain ‘mental’ disorders actually are on the spectrum and just don’t know it. It’s hard to find people willing to help an adult get an evaluation, at least where we live.

  • 8 Patrick // Jun 26, 2012 at 1:15 pm

    I am not sure of the point of this commentary. Yes, if the main talking point for Autism Speaks is a self inflating money grab, then expose away. However, you state that the money grab is to continue a research foundation that has already donated millions. How is more research bad? Even if this is not an epidemic, which would I admit generally refer to a pathological contagion, 1:88 or 1:115 is still a very high number of affected individuals. Research into cause and treatment is necessary to help all these children and adults that are at risk and affected. Giving money to the families is pointless if there is no direction. I say that as the father of an autistic boy who really wouldn’t mind a little money to buy access to this or that treatment.

  • 9 megan // Aug 21, 2012 at 5:25 pm

    For those that have been diagnosed with autism it is tough but like mentioned it has been around for a long time but a lot of people didn’t know what it was.

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