A history of Down Syndrome

AnselmusRight

From their inclusion in 16th-century paintings to their roles in famous families (including, probably, Darwin's), people with Down Syndrome are part of history.

At the Down Wit Dat blog, there's a 8-part (with more on the way) feature that provides some much-needed inclusion to people who are usually just a footnote to somebody else's history. Naturally, the series delves into ideas like eugenics and the institutionalization of differently abled Americans. But, even there, the story is centered on people with Down Syndrome and, as such, it offers a perspective and information that you likely haven't heard before. Great stuff.

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Here's an excerpt about the short life of Charles Waring Darwin, the youngest child of the Charles Darwin you know. Based off historical records and the surviving photograph that you can see here, historians suspect that he had Down Syndrome.

Henrietta, one of his daughters, had this to say about Charles Waring in her book "Emma Darwin, A century of family letters...":

"The poor little baby was born without its full share of intelligence. Both my father and mother were infinitely tender towards him..."

Charles Darwin himself had this to say about his youngest child:

“He was small for his age and backward in walking and talking.... He was of a remarkable sweet, placid and joyful disposition, but had not high spirits.... He often made strange grimaces and shivered, when excited.... He would lie for a long time placidly on my lap looking with a steady and pleased expression at my face... making nice little bubbling noises as I moved his chin.”

Looking at the photograph of the then 45 year old Emma and her newborn son, it is not hard to see what appears to be a "weakened" bridge to the nose and quite possibly be epicanthal folds. However, the photo is extremely grainy and we will never know for sure. Charles Waring Darwin passed away from Scarlet fever at 19 months of age, never having learned to walk or talk. Darwin Sr. recorded in his journal that day: "Poor Dear Baby Died." He was unable to attend the first reading and publication of his theory of Natural Selection due to the illness and death of his youngest son.

How's Your News, Election 2012: developmentally disabled reporters go to GOP and DNC

Developmentally disabled news reporters cover the weird world of the 2012 RNC and DNC. We interview director Arthur Bradford, and backer Matt Stone (South Park, Book of Mormon).

Read the rest

Autism: Epidemic or awareness?

At Discover's big-idea blog The Crux, Emily Willingham has a really interesting post about the prevalence of autism—is it actually increasing, or is this really about medical definitions and increased attention?

This is a topic we've talked about here on BoingBoing before, most recently back in March, when Steve Silberman offered some scientific evidence that suggests the ostensible increases in autism prevalence are "caused" by more accurate diagnosis.

But Willingham's piece adds a couple of new, interesting details to that still-emerging story. Being more aware of neurodiversity makes it look like there's more neurodiversity than there was before we were aware of it. And that was true even for the guy who invented the diagnosis of autism.

Leo Kanner first described autism almost 70 years ago, in 1944. Before that, autism didn’t exist as far as clinicians were concerned, and its official prevalence was, therefore, zero. There were, obviously, people with autism, but they were simply considered insane. Kanner himself noted in a 1965 paper that after he identified this entity, “almost overnight, the country seemed to be populated by a multitude of autistic children,” a trend that became noticeable in other countries, too, he said.

...by 1953, one autism expert was warning about the “abuse of the diagnosis of autism” because it “threatens to become a fashion.”

Read the rest of Willingham's piece, which includes a detailed look at several different studies that back up this view of autism with evidence. It looks like the majority of the "increase" in diagnoses can really be attributed to the process of diagnosis itself.

Image: 74/365 - autism awareness., a Creative Commons Attribution (2.0) image from macbeck's photostream

Integrating autistic people into the community

On the cover of today's NYT, a 8,000+ word feature on Justin Canha, an autistic high school student who has been participating in an intensive program that aims to integrate people with autism (and not just the "high-functioning" kind) into the community. Justin is a talented artist, and is often sweet and charming, but he is also extremely confused by many everyday social interactions. His teacher, Kate Stanton-Paule, has been accompanying him through a multi-year program of daily community routines (shopping, working at part-time jobs), and Amy Harmon's long, well-written piece chronicles the triumphs and failures of the new approach that aims to replace segregation and institutionalization with integration and participation.
Some advocates of “neurodiversity” call this the next civil rights frontier: society, they say, stands to benefit from accepting people whose brains work differently. Opening the workplace to people with autism could harness their sometimes-unusual talents, advocates say, while decreasing costs to families and taxpayers for daytime aides and health care and housing subsidies, estimated at more than $1 million over an adult lifetime.

But such efforts carry their own costs. In this New York City suburb, the school district considered scrapping Ms. Stanton-Paule’s program almost as soon as it began, to save money on the extra teaching assistants who accompanied students to internships, the bank, the gym, the grocery store. Businesses weighed the risks of hiring autistic students who might not automatically grasp standard rules of workplace behavior.

Oblivious to such debates, many autistic high school students are facing the adult world with elevated expectations of their own. Justin, who relied on a one-on-one aide in school, had by age 17 declared his intention to be a “famous animator-illustrator.” He also dreamed of living in his own apartment, a goal he seemed especially devoted to when, say, his mother asked him to walk the dog.

Autistic and Seeking a Place in an Adult World - NYTimes.com (Thanks, Scott!)

(Image: A job at a bakery, Fred R. Conrad/The New York Times, used with permission)