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Sunday, July 24, 2016

Why Are We Still Treating Autism Like an Epidemic?

From WIRED Magazine

By Steve Silberman
September 11, 2015


Steve Silberman, author of
"NeuroTribes"
The true cost to global public health of two decades of acrimonious public debate about vaccines is clear in the recent resurgence of childhood diseases, such as measles, that were on the verge of eradication in many countries in the late 20th century.

Although the theory that vaccines cause autism has been debunked by multiple studies, the anti-vaccine movement has left behind a much more pervasive and insidious legacy: the notion that autism is a distinctive plague of modern times.

If vaccines are not responsible for the rising number of diagnoses, the reasoning goes, the culprit must be some other threat lurking in our increasingly toxic environment: pesticides, antidepressants in the water supply, Wi-Fi or GM foods.


Singer-songwriter Neil Young recently posted to his Facebook wall an MIT computer scientist's absurd claim that Monsanto's herbicide Roundup would render half of all children in the world autistic by 2025. Even Andrew Wakefield - originator of the erroneous study linking vaccines with autism - never went that far.

But it's understandable that people are confused when the messaging even from alleged experts is so confusing. On March 29, 2012, the US Centers for Disease Control and Prevention (CDC) held a press conference to announce that the agency was increasing its estimate of the prevalence of autism among school-age children in the US from its 2006 figure of one in 110 children to one in 88. (The current estimate is one in 68.)


The first question asked by a reporter was whether this figure represented an actual increase in the incidence of autism, or was simply a more accurate approximation of the number of cases out there.

CDC director Thomas Frieden ventured that the revised estimate almost certainly did not reflect an actual increase in incidence, framing the new number as a hopeful sign that more autistic children are being identified earlier in their lives, so they and their families can get the help, educational resources and support services they need.

The data from the agency's monitoring network backed him up. For example, the CDC's estimate of autism prevalence among white children in Utah was 28 times higher than the estimate for Hispanic kids in Alabama.

There's no clinical evidence that white kids are more prone to developing autism than Hispanic ones. The crucial factor is access to healthcare. In Utah, where autism has been tracked closely for three decades, diagnostic resources are widely available, whereas in Alabama, the needs of autistic children and their families in the Hispanic community have been historically under served.


The lesson of these numbers is simple: the more public health resources you put in place to look for autism, the more you find it - and autistic people of all ages and their families reap the benefits.

Until the 90s, most cases of autism went un-diagnosed or were hidden behind labels such as "mental retardation" and "childhood schizophrenia". When the diagnostic criteria were revised to reflect the diversity of the spectrum, the numbers soared.

But that morning at CDC headquarters, the press conference took a much darker turn. Mark Roithmayr, then president of Autism Speaks, the largest autism fundraising organisation in the world, pulled out a Merriam-Webster dictionary and proceeded to read the definition of the word "epidemic".


"Autism is now officially becoming an epidemic in the United States. We are dealing with a national emergency," he declared, though the agency's panel of experts had said nothing of the sort. In the TV coverage that followed, the revised estimate was widely touted as evidence of a "shocking surge" in prevalence.

Autism Speaks promptly released a statement claiming that autism dwarfed the threat to children represented by "diabetes, Aids, cancer, cerebral palsy, cystic fibrosis, muscular dystrophy or Down syndrome - combined."

It's not hard to imagine why some autism fundraising organisations and media outlets embrace terms like "epidemic" and "emergency". "We're not using that word to suggest that autism is contagious," says Geraldine Dawson, the former science director of Autism Speaks. "We're trying to get people to pay attention."

But not all attention is created equal, and the wrong kinds of attention lead to unnecessary fear and stigma, misplaced research priorities and the mis-allocation of precious resources. The vast majority of the research projects funded by Autism Speaks are devoted to sifting through the human genome for candidate genes (more than a thousand have been discovered) and adding to an ever-lengthening list of suspected environmental triggers.

But the real autism emergency - as any autistic person or their family members can tell you - is the scarcity of services to enable people on the spectrum of all ages to live happy, healthy and productive lives.

In that regard, the UK - where the National Autistic Society (NAS) avoids fear-mongering terms like "epidemic" - is far ahead of the US. Two-thirds of NAS's funding for education and family services goes to meeting the needs of adults.


Contrast that to the situation in America, where just two per cent of the autism research funded by the Department of Health & Human Services in 2010 was committed to improving the quality of life for adults on the spectrum. When autism is framed as an aberrtion of the modern world, autistic adults are rendered invisible.

The theory that vaccines cause autism is in the dustbin of history where it belongs. Now it's time to dispose of its toxic legacy.

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