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Five-percent of nothing

Posted Dec 24 2009 7:29pm

To paraphrase Mark Twain, a phony statistic will travel half way around the world before the truth can get its boots on – and even further when the phony statistic is hitched to the wagon of vaccine denialism.

A case in point: last June, blogger Amy Lutz  launched a broadside against neurodiversity with the following alleged quote:

Dr. (Lee) Wachtel estimates that “less than five percent” of diagnosed autistics have the linguistic and cognitive skills to participate in this movement. “Most are not going to grow up to be Temple Grandin,” she adds, referring to the famous autistic author and doctorate in animal science. On the contrary, Dr. Wachtel believes the average autistic will never go to college or live independently, and instead will struggle his entire life with the communication and social deficits that define the disorder…

Wachtel is a child and adolescent psychiatrist at Baltimore’s Kennedy Krieger Center. Lutz didn’t explain what it means to “participate” in neurodiversity, nor did she reflect on the fact that most kids don’t grow up to be Temple Grandin anyway. “This article by Lutz … has the appearance of journalism, and quotes a doctor in support of Lutz’s contention that neurodiversity is a bad thing, overall,” notes autism blogger Kim at CounteringAgeOfAutism, who tracked down the source of Wachtel’s alleged quote. “It doesn’t help that Lutz doesn’t seems to understand what neurodiversity is.”

Lutz’s post raised a few eyebrows. Commenter Jen Niebler wrote ND is not about “marginalizing the ‘real autistics’ – it’s about listening to all autistics and how they wish to be treated.” LBRB founder Kevin Leitch commented “A total misrepresentation of the ND viewpoint who (as I am one, and parent to a severely autistic child I am very aware of this) consider autism a disability AND a difference. Did the author talk to anyone from the ND community before writing this?”

Eventually Wachtel’s quote faded into the ether, only to be resurrected six months later in a comment at about.com, where blogger Lisa Jo Rudy worried that Ari Ne’eman’s recent nomination to the Council on Disability might not sit well with the anti-vaccine crowd. Commenter LoopyLoo wrote:

I’m frustrated and worried. High-functioning, highly verbal people with autism have just about zero in common with my severely impaired, non-verbal child. I’m glad that things have worked out so well for him, but in the general population of people with autism only about five percent will ever be able to participate in a movement like neuro-diversity. Acceptance of/for people who aren’t NT is a fine and lovely goal, but I’d rather have a cure.

When asked to source the “five percent” figure, LoopyLoo pointed to Wachtel. But a query to KK’s media relations office tells the rest of the story:

Regarding Dr. Wachtel’s quote, her comments were pulled from a conversation that she had with a parent. She wasn’t aware that they would appear on a large web site as was the result. Her comments were also made relative to the severely impaired patient population that she sees. The majority of these patients can be described as she did in her comments, but the full context of the discussion would include mention of the fact that advances are happening in the field of early intervention which may change outcomes for toddlers who are being newly diagnosed today at age two or earlier. Also – she does not have a citation or reference for the “less than 5 percent” reference. Again – it was a casual comment made to a parent, and within the context of her patient population.

In a follow up email, KK characterized Wachtel’s words as “casual comments made relative to Dr. Wachtel’s daily frame of reference – her severely affected patient population.” In other words, the five percent figure does not refer to all autism spectrum disorders.

The blogger, Amy Lutz, confirms the quote came from her private conversation with Wachtel, and she stands by it. “I asked Dr. Wachtel to approximate, based on her seven years of work in autism treatment and research, the percentage of diagnosed autistics who could actively participate in a political movement – because, as we all agree, there is (sic) no data in the scientific literature to answer this question,” said Lutz in an email. “Her answer, five percent, is, as I explicitly stated in my essay, an ‘estimate.’”

In a perfect world, a throwaway quote by a careless writer wouldn’t matter. But in our wired, interconnected world, poorly sourced quotes are sustenance for ideologues.

The premise here – that only the highest functioning autistics can “participate” in neurodiveristy –   would be news to many of the pro-ND bloggers who are significantly disabled, notes autism blogger Sullivan. “The fact of the matter is that everyone (autistic/non-autistic, all levels of disability) benefit from neurodiversity.”

As anti-vaccine activists and other line up to oppose Ari Ne’eman’s nomination, we are sure to see more inaccurate and self-serving definitions of neurodiveristy. And it’s a safe bet that the “five-percent” quote will surface yet again.

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