Maybe There Is No Autism at All, But Many Different Kinds of Autism
Since the autism diagnosis first appeared in 1943, the world has become a much more welcoming place for people with autism, but it's still not quite where it should be.
John Donvan is co-author of In a Different Key: The Story of Autism, He is also a contributing correspondent to ABC News, where his career postings from the past thirty years have included: Chief White House Correspondent, Chief Moscow Correspondent, Amman Bureau Chief, Jerusalem Correspondent, London Correspondent, Eastern Europe Correspondent, and, most recently, a regular correspondent for Nightline. He is also a debate moderator at Intelligence Squared U.S..
John Donvan: The world we live in today, in terms of autism, was really created over the last 50 or 60-70 years from the time that the diagnosis was first recognized, which goes back to 1943. And in those intervening years, families had to fight so very hard to change the world to make a place in it for their loved ones because 50, 60 years ago, the world didn’t want them. People with autism were sent away to institutions. They were hidden. They were not allowed into schools. They were discriminated against. They were isolated. And the fact that we live in a world now where things are so different is a result of very hard battles fought by their families, by their parents in particular. And the reason that the past matters, the reason that we want to revive the stories of what those parents did and those families did over half a century is because the job is really only half-done.
We’re in a world now where there are more people with an autism diagnosis than ever before. In a decade, 500,000 teenagers are going to turn into adults with autism and there really is no place for them. We’ve figured out what to do when people are kids with autism. We’ve made a lot of adjustments in terms of giving them education, bringing programs into schools, seeing kids in TV shows. But there’s not very much set up for adults. There isn’t a place for them to live. There aren’t employment opportunities. And with so much left to do, we think we find in the past the inspiration for what to do — that activism works, that it’s worth trying to battle. It’s worth trying to change society’s mind because society’s mind was changed in regard to the kids. But we really haven’t come that far in regard to adults. And so looking at the past, first of all just revives stories of people whose stories deserve to be revived. They did so much; their stories are unsung. But they serve as an inspiration for the job that has to be done in the future, particularly when it comes to adults with autism.
We don’t know what the root cause of autism is. And there have been a lot of ideas put forth over the years. People are familiar now with some of them because we lived through a period of time when it was a very popularly held idea that vaccines cause autism. There are still people who believe that firmly. But the scientific studies that have looked at that have disputed that. Going back 50 or 60 years ago, it was the absolute gold standard psychiatric opinion that autism was caused by mothers not loving their children enough. That is what if you look at the textbooks on autism from the 1960s, if a mother in the 1960s took her child to a specialist she would be told this is your fault. You did this. There’s something wrong with you and you need to be the one who gets treatment because you did something to your child. We have to figure out what’s wrong with you. And there were women who spent hundreds of hours and thousands of dollars going through psychoanalysis to try to figure out how they hurt their kids. That sounds crazy. The vaccine theory has been disputed. Well that leaves us still in a place where actually we don’t know still what the root cause of autism is. We don’t even know if there is such a thing as just autism or maybe different autisms. You know autism doesn’t have any biological markers. You can’t do a cheek swab for it or look at somebody’s DNA and say for sure oh, that’s a case of autism, inherited autism. We don’t have any of that. Autism only comes down to everybody having a general agreement about what autism should be, drawing up a list of criteria, looking at a person, and saying does that person’s behavior match the criteria or not. Well there’s all kinds of room for swishy definition in there.
There are people who are very, very successful professionals, particularly in the sciences, you know. Professors at universities who are brilliant at math who nevertheless now are labeled autistic because the definition is so broad that it includes them. And that goes to the fact that they have strong, real social deficits. They may have grown up being bullied and teased for being isolated and a little bit different and not being able to make eye contact. And in the current definition, those people are now autistic. But so are the people who are autistic under the label 50 years ago. And those are people who have very, very little capacity for language, capacity for independence. They’re unable to dress themselves. If the front door of their house is left unlocked, they will wander into the street, get run over by a car. They will — children will wander over to the next house and drown in the swimming pool. Those kinds of drownings are happening constantly because that kind of autism is so, so very impairing. And I think the one misunderstanding nowadays comes from the fact that we have not really agreed on what we mean by autism, although we all think we have. Right now, autism is an umbrella term for a list of behaviors whose cause or possibly causes we don’t know.
The autism diagnosis first appeared in 1943. Since then, the world has become a much more hospitable, welcoming place for people with autism, thanks primarily to the efforts of family members and advocates who fought for acceptance of their loved ones. But, according to author and journalist John Donvan, the fight to bring autism out from the shadows of society is only half-done.
"Going back 50 or 60 years ago, it was the absolute gold standard psychiatric opinion that autism was caused by mothers not loving their children enough." This is the world we came from. What kind of world are we heading toward? What opportunities will be made available to the 500,000 young adults with autism who are due to reach working age in the coming decade? These are issues we, as a society, need to consider more seriously.
Finally, another obstacle to a better future comes in the form of autism's amorphous definition and imprecise grounds for diagnosis. Autism is not something you can just spot in DNA. It's almost wholly to do with behavior and whether the way someone acts corresponds to the parameters set for the diagnosis. But not enough people agree on what is autism and what isn't, and that's caused more problems than it solves.
Donvan is co-author of the new book In a Different Key: The Story of Autism
The 'People Map of the United States' zooms in on America's obsession with celebrity
- Replace city names with those of their most famous residents
- And you get a peculiar map of America's obsession with celebrity
- If you seek fame, become an actor, musician or athlete rather than a politician, entrepreneur or scientist
Chicagoland is Obamaland
Image: The Pudding
Chicagoland's celebrity constellation: dominated by Barack, but with plenty of room for the Belushis, Brandos and Capones of this world.
Seen from among the satellites, this map of the United States is populated by a remarkably diverse bunch of athletes, entertainers, entrepreneurs and other persons of repute (and disrepute).
The multitalented Dwayne Johnson, boxing legend Muhammad Ali and Apple co-founder Steve Jobs dominate the West Coast. Right down the middle, we find actors Chris Pratt and Jason Momoa, singer Elvis Presley and basketball player Shaquille O'Neal. The East Coast crew include wrestler John Cena, whistle-blower Edward Snowden, mass murderer Ted Bundy… and Dwayne Johnson, again.
The Rock pops up in both Hayward, CA and Southwest Ranches, FL, but he's not the only one to appear twice on the map. Wild West legend Wyatt Earp makes an appearance in both Deadwood, SD and Dodge City, KS.
How is that? This 'People's Map of the United States' replaces the names of cities with those of "their most Wikipedia'ed resident: people born in, lived in, or connected to a place."
‘Cincinnati, Birthplace of Charles Manson'
Image: The Pudding
Keys to the city, or lock 'em up and throw away the key? A city's most famous sons and daughters of a city aren't always the most favoured ones.
That definition allows people to appear in more than one locality. Dwayne Johnson was born in Hayward, has one of his houses in Southwest Ranches, and is famous enough to be the 'most Wikipedia'ed resident' for both localities.
Wyatt Earp was born in Monmouth, IL, but his reputation is closely associated with both Deadwood and Dodge City – although he's most famous for the Gunfight at the O.K. Corral, which took place in Tombstone, AZ. And yes, if you zoom in on that town in southern Arizona, there's Mr Earp again.
The data for this map was collected via the Wikipedia API (application programming interface) from the English-language Wikipedia for the period from July 2015 to May 2019.
The thousands of 'Notable People' sections in Wikipedia entries for cities and other places in the U.S. were scrubbed for the person with the most pageviews. No distinction was made between places of birth, residence or death. As the developers note, "people can 'be from' multiple places".
Pageviews are an impartial indicator of interest – it doesn't matter whether your claim to fame is horrific or honorific. As a result, this map provides a non-judgmental overview of America's obsession with celebrity.
Royals and (other) mortals
Image: The Pudding
There's also a UK version of the People Map – filled with last names like Neeson, Sheeran, Darwin and Churchill – and a few first names of monarchs.
Celebrity, it is often argued, is our age's version of the Greek pantheon, populated by dozens of major gods and thousands of minor ones, each an example of behaviours to emulate or avoid. This constellation of stars, famous and infamous, is more than a map of names. It's a window into America's soul.
But don't let that put you off. Zooming in on the map is entertaining enough: celebrities floating around in the ether are suddenly tied down to a pedestrian level, and to real geography. And it's fun to see the famous and the infamous rub shoulders, as it were.
Barack Obama owns Chicago, but the suburbs to the west of the city are dotted with a panoply of personalities, ranging from the criminal (Al Capone, Cicero) and the musical (John Prine, Maywood) to figures literary (Jonathan Franzen, Western Springs) and painterly (Ivan Albright, Warrenville), actorial (Harrison Ford, Park Ridge) and political (Eugene V. Debs, Elmhurst).
Freaks and angels
The People Map of the U.S. was inspired by the U.S.A. Song Map, substituting song titles for place names.
It would be interesting to compare 'the most Wikipedia'ed' sons and daughters of America's cities with the ones advertised at the city limits. When you're entering Aberdeen, WA, a sign invites you to 'come as you are', in homage to its most famous son, Kurt Cobain. It's a safe bet that Indian Hill, OH will make sure you know Neil Armstrong, first man on the moon, was one of theirs. But it's highly unlikely that Cincinnati, a bit further south, will make any noise about Charles Manson, local boy done bad.
Inevitably, the map also reveals some bitterly ironic neighbours, such as Ishi, the last of the Yahi tribe, captured near Oroville, CA. He died in 1916 as "the last wild Indian in North America". The most 'pageviewed' resident of nearby Colusa, CA is Byron de la Beckwith, Jr., the white supremacist convicted for the murder of Civil Rights activist Medgar Evers.
As a sampling of America's interests, this map teaches that those aiming for fame would do better to become actors, musicians or athletes rather than politicians, entrepreneurs or scientists. But also that celebrity is not limited to the big city lights of LA or New York. Even in deepest Dakota or flattest Kansas, the footlights of fame will find you. Whether that's good or bad? The pageviews don't judge...
Average waiting time for hitchhikers in Ireland: Less than 30 minutes. In southern Spain: More than 90 minutes.
- A popular means of transportation from the 1920s to the 1980s, hitchhiking has since fallen in disrepute.
- However, as this map shows, thumbing a ride still occupies a thriving niche – if at great geographic variance.
- In some countries and areas, you'll be off the street in no time. In other places, it's much harder to thumb your way from A to B.
Technology may soon grant us immortality, in a sense. Here's how.
- Through the Connectome Project we may soon be able to map the pathways of the entire human brain, including memories, and create computer programs that evoke the person the digitization is stemmed from.
- We age because errors build up in our cells — mitochondria to be exact.
- With CRISPR technology we may soon be able to edit out errors that build up as we age, and extend the human lifespan.
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