Autism and Neurodiversity

Last week's PostSecret included the postcard at right, which shows an illustration of an Autism Awareness ribbon and reads: "I AM NOT A PUZZLE! I DON'T WANT TO BE CURED."

This brings up an interesting point that I didn't have space to cover in my recent Nature Medicine story about autism and the parents of autistic children who believe the condition was caused by mercury-based preservatives in vaccines. While reporting for the story, I interviewed several parents of autistic children. They fell into two camps: Those who believed that vaccines poisoned their otherwise normally developing children so that they developed the neurological symptoms associated with autism spectrum disorders; and those who believed that their child was born with a set of genes that would have caused autism regardless of whether their child had received a vaccination. At the heart of this bifurcation is a bigger question: Is autism a disease that can, or should, be "cured?"

One autism parent and fellow blogger, Kevin Leitch, says no. Leitch used to believe that mercury in vaccines caused autism, but changed his mind after several years of reviewing the scientific literature. His daughter's brain, he says, is not disease-ridden, but an example of "neurodiversity."

"The idea that shes damaged in some way became fairly repugnant to us," Leitch told me. "We just don’t see her like that. I objected very strongly to the language being used to describe them: poisoned, empty shells, dead souls, toxic train wrecks...You're talking about children here; we cant call them these things."

Another blogger, Autism Diva, has an autistic child and has been diagnosed herself with Asperger's Syndrome (an autism-spectrum disorder). Autism Diva, who obviously doesn't have a hard time accepting that the disorder has a genetic component, had similar sentiments:

"I love my autistic child. How could you think of re-wiring them and making them someone else?" she said. "My child’s very impaired and needs a lot of help. If I left her alone in the world she would die. That’s kind of scary, and I can't see a lot of parents signing up for that. But it's common, it's not a new thing. Not an infection that we all ought to be fighting, it’s a part of humanity. You get on a slippery slope to eugenics very quickly. Is every brain one day going to be uniform?"

This concept of "neurodiversity" is explored in depth—as it relates to autism but also to racism, sexual orientation, and even left-handedness—by yet another blogger, Kathleen Seidel at her website, neurodiversity.com.

Violent Vaccine Denialists

Sadly, the anti-vaccination lobby seems to be growing in political influence, according to an editorial in May’s Nature Neuroscience (under firewall). The editors point out (as I did this fall in a Nature Medicine feature story about how vaccine denialists affect public health) that a host of rigorous scientific studies have debunked each and every claim of a mercury-autism link. Nevertheless, in the same insidious style as animal rights wackos, the anti-vaccers won’t back down—on Capitol Hill, in the press, or in their personal attacks. The editorial’s money quote:

People who oppose the [mercury-autism link] have been harassed with repeated calls, whether they have written a letter to their local paper or an editorial for The Wall Street Journal. The harassment includes parents of autistic children who do not align themselves with the anti-vaccine movement. Kevin Leitch reports, 'I have personally been told that because I am not chelating my daughter, I am a child abuser. That I am a murderer. I have had threats of violence made against me, and a few people have even sent personal hate mail to my seven-year-old autistic daughter.'

As Orac points out, Kevin Leitch made further comments about harassment by anti-vaccers on his blog:

I know of four scientists whom I have exchanged emails with who have been targeted by this same extreme group and who had:

1) Threats of property damage made against their homes and property
2) Threats of physical violence made against them
3) Been the victims of concerted email and telephone harassment campaigns to the point where security services have had to get involved
4) Had their associations with entities that merely sound like Pharma organisations misrepresented
5) Been accused, on no basis at all, of fraud

These scientists are staggered that merely performing accurate science has led them to having to (in three cases I know of) inform Campus Police of the places they work at of their movements in order to remain safe.

Indeed, this behavior reminds me of an act of “protest” against esteemed UCLA neuroscientist Dario Ringach. Ringach’s lab used monkeys to study information processing in the visual system. (Primates are the only animals whose eye biology/physiology is comparable to humans.) In August, after receiving several threats from the Animal Liberation Front—including a bomb on his porch—Ringach sent the ALF an email saying, “You win,” and closed up his lab.

The anti-vaccers whom I interviewed for my story presented themselves as helpless victims of some kind of medical/CDC conspiracy. I’d never suggest that any of them are instead violent manipulators. However, it’s time to start holding the activist groups they’re associated with accountable for their violent acts, regardless of their philosophical/political motivations. I thus agree whole-heartedly with the logical, if naïve, recommendation from the editorial:

In the end, these fears are driven by ideology rather than science. We urge legislators to base science policy on the best consensus among researchers in the field, rather than the emotional appeals of an agenda-driven group, especially one that attempts to bully into silence those with opposing opinions.

(Right, because our government always tries to base its science policy on sound science. Like our stance on stem cells, for instance, or the space program, or global warming. Sigh.)