Lies, Statistics, and Autism Speaks

Autism Speaks has a factsheet about autism, of which at least one portion (“Prevalence vs. Private Funding”) regularly goes viral. It contains claims about the prevalence of autism as compared to the prevalence of four childhood diseases, and supposed “facts” about the amount of funding that goes to researching each of the five conditions.

Unfortunately, Autism Speaks does not provide a source for the funding information. I requested the information in one sentence: “Could you please provide the source for the funding numbers provided in the ‘Prevalence vs. Private Funding’ section of your ‘Facts About Autism’ page?”

I received a reply from their Director of Science Communication, Jessica Sachs, this morning. Unfortunately, she provided no information regarding what I had explicitly requested: the funding amounts. However, she did provide supposed sources for the claimed disease rates, with the exception of muscular dystrophy.

Of these, the stated juvenile diabetes rate appears accurate. However, the link to the Juvenile Diabetes Research Foundation’s Fact Sheet that Sachs provided does not provide information necessary to substantiate the claim. The closest it comes to listing incidence is the number of diagnoses per year: “more than 15,000.” Since this number gives no information about the distribution of diagnoses across ages, it is insufficient for determining the number or percentage of children diagnosed with diabetes at any point in time. The National Institutes of Health’s “Overview of Diabetes in Children and Adolescents” gives a rate of 0.26% of the US population below age twenty, which translates to approximately 1 in 500. JDRF’s FAQ provides an estimate of between 1 in 400 and 1 in 500.

From here on out, it gets worse. Sachs provided no information about muscular dystrophy, which Autism Speaks claims affects 1 in 100,000. According to the NIH, the rate of Duchenne muscular dystrophy alone is 1 in 3,600 male infants.  The rate of Spinal Muscular Atrophy is between 1 in 6,000 and 1 in 10,000. Clearly, the rate of muscular dystrophy in general cannot be 1 in 100,000. In fact, the only thing beyond autism fear-mongering that showed up when I searched for muscular dystrophy at that incidence is a rare subtype called X-linked Emery-Dreifuss muscular dystrophy.

Autism Speaks’ official stated incidence of Pediatric AIDS is 1 in 300. This is rather spectacularly vague, considering the tremendous variation between countries. However, the link Sachs provided was to the incidence within the USA. Unfortunately, the link also goes to a server error. The number Sachs listed out for me, supposedly collected in October 2009, is 100 to 200 children per year. That matches the Elisabeth Glaser Pediatric AIDS Foundation’s claims about United States incidence here, but still leaves the problem of that being nowhere near matching an incidence of 1 in 300 children affected. In fact, even UNICEF does not have an estimate of the number of children affected by AIDS in the United States. With regard to the global population, UNICEF’s Childinfo.org estimates that as of 2010, there were approximately 3.4 million children under 15 affected by HIV/AIDS. The 2010 World Bank estimate of the global population was 6,855,230,000. Euromonitor International states the percentage of the world population under age 14 as of 2010 to be 26.2. This calculates out to 1,782,359,800 children under age 14. Using the Childinfo.org statistics, this means approximately 1 in 524 children has HIV/AIDS. While Autism Speaks isn’t as far off as they are on muscular dystrophy, their number still doesn’t match any reliable source.

Finding straightforward leukemia information is tricky. In fact, Sachs provided me with a general “cancer” rate of 10,000 per year. She also provided me with a link to this page, which is far more useful for learning what leukemia is than it is for tracking down a solid diagnostic rate. Cancer.gov states an incidence rate of all childhood cancers of between 1 in 5,000 and 1 in 10,000. With regard to childhood cancers specifically called “leukemias,” the CDC incidence from 2008 is 46.9 per 1,000,000 or approximately 1 in 21,300. Looking beyond childhood, the National Cancer Institute’s age-adjusted incidence rate for leukemia is 12.5 per 100,000 or approximately 1 in 8,000. This data may not include children, but that is not relevant for the evaluation of Autism Speaks’ claims; the rates for both children and adults are substantially below the stated 1 in 1200 regardless of age or specific type of cancer diagnosis.

Admittedly, these errors are not entirely to Autism Speaks’ benefit, since in two of the four cases they overstate the incidence of the disease in question. However, the lack of factual basis for all but one of the claims is alarming in and of itself. I would not be surprised to find that the funding amounts are similarly inaccurate.

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9 thoughts on “Lies, Statistics, and Autism Speaks

  1. Also worth noting is that whilst diabetes is relatively rare compared to even the most credible estimate of the number of autistic individuals as a percentage of the world, I think if you lined up every Human being in the world, explained to them what living with diabetes would be like, especially long-term, then told them they had to choose between autism and diabetes…

    Oh yeah, I have diabetes, and I am autistic.

    • *nodnodnod*

      Yes. I didn’t mention it in the post, but I have diabetes. I agree entirely. I also have cystic fibrosis, which used to show up in lists of diseases that get unfairly large amounts of funding compared to autism. Seriously, I’d rather the funding go to the things that kill people. I’m perfectly happy being autistic.

      Edit: Though if we include Type 2, at least in the US the percentage will exceed the percentage of autistic people. I’m not certain whether this would be true of the total world population.

      • When I was diagnosed with diabetes, one of the other children on the ward that I was in had cystic fibrosis. I was told that this girl, who was so bright and bubbly a lot of the time that it knocked me for a loop, would probably die in ten to twenty years. I do not know how far cystic fibrosis treatment has come since then, but it was quite a big concept to get my head around.

        I am pretty sure that American percentages of diabetes when both “types” are accounted for would be commensurate with the rest of the world. I do, however, believe that a study of how rates of diabetes correlate with rates of overpopulation as opposed to obesity would be quite revealing to say the least.

      • Median life expectancy is late thirties now, I believe. But just in the past few months, there’s been a drug approved that corrects the genetic defect in about 4% of people with CF. And there’s another drug in testing (just received very promising results in Phase 2 clinical trials) that may make it work for everyone with at least one copy of the most common mutation (around 90% of people with CF).

        I would be very interested to see the results of such a study. I’m quite dubious about all this “obesity is the single true cause!” hype, to say the least.

      • Why choose? Ortho-Mcneil-Janssen is using Autism Speaks to promote drugs that don’t help Autism , but can cause diabetes and other profitable conditions.

  2. The distinction among any of those disorders and autism–well, the big distinction, among many others–is that they are fatal, even type 1 diabetes before insulin therapy was available. In my mind, fatal childhood diseases deserve more research attention than nonfatal disorders and don’t belong in a comparison to autism, at all. If it kills children, it deserves more funding. Do they even know what spinal muscle atrophy does? Leukemia? The requirements for constant vigilance and testing in type 1 diabetes, including the ever-present threat of a fatal crisis? What it means for a child to have an HIV infection? If my children had any of these diseases, I would find this comparative that Autism Speaks keeps using more than fallacious–it would be deeply, deeply offensive.

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