Posts Tagged ‘autism spectrum’
Forgotten history of Autism?
Posted by: adonis49 on: September 18, 2017
Forgotten history of Autism?
Decades ago, few pediatricians had heard of autism.
In 1975, One in 5,000 kids was estimated to have it. Today, 1 in 68 is on the autism spectrum.
What caused this steep rise? Steve Silberman points to “a perfect storm of autism awareness” — a pair of psychologists with an accepting view, an unexpected pop culture moment and a new clinical test.
But to really understand, we have to go back further to an Austrian doctor by the name of Hans Asperger, who published a pioneering paper in 1944.
Because the paper was buried in time, autism has been shrouded in misunderstanding ever since. (This talk was part of a TED2015 session curated by Pop-Up Magazine: popupmagazine.com or @popupmag on Twitter.)
Just after Christmas last year, 132 kids in California got the measles by either visiting Disneyland or being exposed to someone who’d been there.
The virus then hopped the Canadian border, infecting more than 100 children in Quebec. One of the tragic things about this outbreak is that measles, which can be fatal to a child with a weakened immune system, is one of the most easily preventable diseases in the world.
An effective vaccine against it has been available for more than half a century, but many of the kids involved in the Disneyland outbreak had not been vaccinated because their parents were afraid of something allegedly even worse: autism.
But wait — wasn’t the paper that sparked the controversy about autism and vaccines debunked, retracted, and branded a deliberate fraud by the British Medical Journal?
Don’t most science-savvy people know that the theory that vaccines cause autism is B.S.? I think most of you do, but millions of parents worldwide continue to fear that vaccines put their kids at risk for autism.
Why? This is a graph of autism prevalence estimates rising over time. For most of the 20th century, autism was considered an incredibly rare condition.
The few psychologists and pediatricians who’d even heard of it figured they would get through their entire careers without seeing a single case. For decades, the prevalence estimates remained stable at just three or four children in 10,000. But then, in the 1990s, the numbers started to skyrocket.
Fundraising organizations like Autism Speaks routinely refer to autism as an epidemic, as if you could catch it from another kid at Disneyland.
So what’s going on? If it isn’t vaccines, what is it? I
f you ask the folks down at the Centers for Disease Control in Atlanta what’s going on, they tend to rely on phrases like “broadened diagnostic criteria” and “better case finding” to explain these rising numbers.
But that kind of language doesn’t do much to allay the fears of a young mother who is searching her two-year-old’s face for eye contact.
If the diagnostic criteria had to be broadened, why were they so narrow in the first place? Why were cases of autism so hard to find before the 1990s?
Five years ago, I decided to try to uncover the answers to these questions. I learned that what happened has less to do with the slow and cautious progress of science than it does with the seductive power of storytelling.
For most of the 20th century, clinicians told one story about what autism is and how it was discovered, but that story turned out to be wrong, and the consequences of it are having a devastating impact on global public health.
There was a second, more accurate story of autism which had been lost and forgotten in obscure corners of the clinical literature. This second story tells us everything about how we got here and where we need to go next.
The first story starts with a child psychiatrist at Johns Hopkins Hospital named Leo Kanner. In 1943, Kanner published a paper describing 11 young patients who seemed to inhabit private worlds, ignoring the people around them, even their own parents. They could amuse themselves for hours by flapping their hands in front of their faces, but they were panicked by little things like their favorite toy being moved from its usual place without their knowledge.
Based on the patients who were brought to his clinic, Kanner speculated that autism is very rare.
By the 1950s, as the world’s leading authority on the subject, he declared that he had seen less than 150 true cases of his syndrome while fielding referrals from as far away as South Africa. That’s actually not surprising, because Kanner’s criteria for diagnosing autism were incredibly selective.
For example, he discouraged giving the diagnosis to children who had seizures but now we know that epilepsy is very common in autism. He once bragged that he had turned nine out of 10 kids referred to his office as autistic by other clinicians without giving them an autism diagnosis.
Kanner was a smart guy, but a number of his theories didn’t pan out. He classified autism as a form of infantile psychosis caused by cold and unaffectionate parents.
These children, he said, had been kept neatly in a refrigerator that didn’t defrost. At the same time, however, Kanner noticed that some of his young patients had special abilities that clustered in certain areas like music, math and memory.
One boy in his clinic could distinguish between 18 symphonies before he turned two. When his mother put on one of his favorite records, he would correctly declare, “Beethoven!” But Kanner took a dim view of these abilities, claiming that the kids were just regurgitating things they’d heard their pompous parents say, desperate to earn their approval. As a result, autism became a source of shame and stigma for families, and two generations of autistic children were shipped off to institutions for their own good, becoming invisible to the world at large.
Amazingly, it wasn’t until the 1970s that researchers began to test Kanner’s theory that autism was rare.
Lorna Wing was a cognitive psychologist in London who thought that Kanner’s theory of refrigerator parenting were “bloody stupid,” as she told me. She and her husband John were warm and affectionate people, and they had a profoundly autistic daughter named Susie.
Lorna and John knew how hard it was to raise a child like Susie without support services, special education, and the other resources that are out of reach without a diagnosis. To make the case to the National Health Service that more resources were needed for autistic children and their families,
Lorna and her colleague Judith Gould decided to do something that should have been done 30 years earlier. They undertook a study of autism prevalence in the general population. They pounded the pavement in a London suburb called Camberwell to try to find autistic children in the community.
What they saw made clear that Kanner’s model was way too narrow, while the reality of autism was much more colorful and diverse. Some kids couldn’t talk at all, while others waxed on at length about their fascination with astrophysics, dinosaurs or the genealogy of royalty.
these children didn’t fit into nice, neat boxes, as Judith put it, and they saw lots of them, way more than Kanner’s monolithic model would have predicted.
At first, they were at a loss to make sense of their data.
How had no one noticed these children before? But then Lorna came upon a reference to a paper that had been published in German in 1944, the year after Kanner’s paper, and then forgotten, buried with the ashes of a terrible time that no one wanted to remember or think about.
Kanner knew about this competing paper, but scrupulously avoided mentioning it in his own work. It had never even been translated into English, but luckily, Lorna’s husband spoke German, and he translated it for her.
The paper offered an alternate story of autism.
Its author was a man named Hans Asperger, who ran a combination clinic and residential school in Vienna in the 1930s. Asperger’s ideas about teaching children with learning differences were progressive even by contemporary standards.
Mornings at his clinic began with exercise classes set to music, and the children put on plays on Sunday afternoons.Instead of blaming parents for causing autism, Asperger framed it as a lifelong, polygenetic disability that requires compassionate forms of support and accommodations over the course of one’s whole life.
Rather than treating the kids in his clinic like patients, Asperger called them his little professors,and enlisted their help in developing methods of education that were particularly suited to them.
Crucially, Asperger viewed autism as a diverse continuum that spans an astonishing range of giftedness and disability. He believed that autism and autistic traits are common and always have been, seeing aspects of this continuum in familiar archetypes from pop culture like the socially awkward scientist and the absent-minded professor.
He went so far as to say, it seems that for success in science and art, a dash of autism is essential.
Lorna and Judith realized that Kanner had been as wrong about autism being rare as he had been about parents causing it. Over the next several years, they quietly worked with the American Psychiatric Association to broaden the criteria for diagnosis to reflect the diversity of what they called “the autism spectrum.”
In the late ’80s and early 1990s, their changes went into effect, swapping out Kanner’s narrow model for Asperger’s broad and inclusive one.
These changes weren’t happening in a vacuum.
By coincidence, as Lorna and Judith worked behind the scenes to reform the criteria, people all over the world were seeing an autistic adult for the first time. Before “Rain Man” came out in 1988, only a tiny, ingrown circle of experts knew what autism looked like, but after Dustin Hoffman’s unforgettable performance as Raymond Babbitt earned “Rain Man” four Academy Awards, pediatricians, psychologists, teachers and parents all over the world knew what autism looked like.
The combination of “Rain Man,” the changes to the criteria, and the introduction of these tests created a network effect, a perfect storm of autism awareness. The number of diagnoses started to soar, just as Lorna and Judith predicted, indeed hoped, that it would, enabling autistic people and their families to finally get the support and services they deserved.
If the CDC’s current estimate, that One in 68 kids in America are on the spectrum, is correct, autistics are one of the largest minority groups in the world.
In recent years, autistic people have come together on the Internet to reject the notion that they are puzzles to be solved by the next medical breakthrough, coining the term “neurodiversity” to celebrate the varieties of human cognition.
One way to understand neurodiversity is to think in terms of human operating systems. Just because a P.C. is not running Windows doesn’t mean that it’s broken. By autistic standards, the normal human brain is easily distractable, obsessively social, and suffers from a deficit of attention to detail.
To be sure, autistic people have a hard time living in a world not built for them. [Seventy] years later, we’re still catching up to Asperger, who believed that the “cure” for the most disabling aspects of autism is to be found in understanding teachers, accommodating employers, supportive communities, and parents who have faith in their children’s potential.
We need All kinds of minds: autistic Temple Grandin
Professor · templegrandin.com. Temple Grandin, diagnosed with autism as a child, talks about how her mind works — sharing her ability to “think in pictures,” which helps her solve problems that neuro-typical brains might miss.
She makes the case that the world needs people on the autism spectrum: visual thinkers, pattern thinkers, verbal thinkers, and all kinds of smart geeky kids.
19:43
Temple Grandin. The world needs all kinds of minds
00:34 It’s a continuum of traits. When does a nerd turn into Asperger, which is just mild autism? I mean, Einstein and Mozart and Tesla would all be probably diagnosed as autistic spectrum today. And one of the things that is really going to concern me is getting these kids to be the ones that are going to invent the next energy things, you know, that Bill Gates talked about this morning.
If you want to understand autism, animals. And I want to talk to you now about different ways of thinking. You have to get away from verbal language. I think in pictures, I don’t think in language.
Now, the thing about the autistic mind is it attends to details.
OK, this is a test where you either have to pick out the big letters, or pick out the little letters, and the autistic mind picks out the little letters more quickly.
And the thing is, the normal brain ignores the details. Well, if you’re building a bridge, details are pretty important because it will fall down if you ignore the details.
And one of my big concerns with a lot of policy things today is things are getting too abstract. People are getting away from doing hands-on stuff. I’m really concerned that a lot of the schools have taken out the hands-on classes, because art, and classes like that, those are the classes where I excelled.
In my work with cattle, I noticed a lot of little things that most people don’t notice would make the cattle balk. Like, for example, this flag waving, right in front of the veterinary facility. This feed yard was going to tear down their whole veterinary facility; all they needed to do was move the flag.
Rapid movement, contrast.
In the early ’70s when I started, I got right down in the chutes to see what cattle were seeing. People thought that was crazy. A coat on a fence would make them balk, shadows would make them balk, a hose on the floor … people weren’t noticing these things — a chain hanging down — and that’s shown very, very nicely in the movie.
In fact, I loved the movie, how they duplicated all my projects. That’s the geek side. My drawings got to star in the movie too. And actually it’s called “Temple Grandin,” not “Thinking In Pictures.”
What is thinking in pictures? It’s literally movies in your head.
My mind works like Google for images. Now, when I was a young kid I didn’t know my thinking was different. I thought everybody thought in pictures.
And then when I did my book, “Thinking In Pictures,” I start interviewing people about how they think. And I was shocked to find out that my thinking was quite different.
Like if I say, “Think about a church steeple” most people get this sort of generalized generic one. Now, maybe that’s not true in this room, but it’s going to be true in a lot of different places. I see only specific pictures. They flash up into my memory, just like Google for pictures.
And in the movie, they’ve got a great scene in there where the word “shoe” is said, and a whole bunch of ’50s and ’60s shoes pop into my imagination.
There is my childhood church, that’s specific. There’s some more, Fort Collins. OK, how about famous ones? And they just kind of come up, kind of like this. Just really quickly, like Google for pictures. And they come up one at a time, and then I think, “OK, well maybe we can have it snow, or we can have a thunderstorm,” and I can hold it there and turn them into videos.
Visual thinking was a tremendous asset in my work designing cattle-handling facilities. And I’ve worked really hard on improving how cattle are treated at the slaughter plant.
I’m not going to go into any gucky slaughter slides. I’ve got that stuff up on YouTube if you want to look at it. But, one of the things that I was able to do in my design work is I could actually test run a piece of equipment in my mind, just like a virtual reality computer system.
And this is an aerial view of a recreation of one of my projects that was used in the movie. That was like just so super cool. And there were a lot of kind of Asperger types and autism types working out there on the movie set too. (Laughter)
But one of the things that really worries me is: Where’s the younger version of those kids going today? They’re not ending up in Silicon Valley, where they belong.
One of the things I learned very early on because I wasn’t that social, is I had to sell my work, and not myself. And the way I sold livestock jobs is I showed off my drawings, I showed off pictures of things.
Another thing that helped me as a little kid is, boy, in the ’50s, you were taught manners. You were taught you can’t pull the merchandise off the shelves in the store and throw it around.
When kids get to be in third or fourth grade, you might see that this kid’s going to be a visual thinker, drawing in perspective. Now, I want to emphasize that not every autistic kid is going to be a visual thinker.
I had this brain scan done several years ago, and I used to joke around about having a gigantic Internet trunk line going deep into my visual cortex. This is tensor imaging. And my great big internet trunk line is twice as big as the control’s.
The red lines there are me, and the blue lines are the sex and age-matched control. And there I got a gigantic one, and the control over there, the blue one, has got a really small one.
And some of the research now is showing is that people on the spectrum actually think with primary visual cortex. Now, the thing is, the visual thinker’s just one kind of mind.
You see, the autistic mind tends to be a specialist mind — good at one thing, bad at something else. And where I was bad was algebra. And I was never allowed to take geometry or trig. Gigantic mistake: I’m finding a lot of kids who need to skip algebra, go right to geometry and trig.
Another kind of mind is the pattern thinker. More abstract. These are your engineers, your computer programmers. Now, this is pattern thinking.
That praying mantis is made from a single sheet of paper — no scotch tape, no cuts. And there in the background is the pattern for folding it. Here are the types of thinking: photo-realistic visual thinkers, like me; pattern thinkers, music and math minds.
Some of these oftentimes have problems with reading. You also will see these kind of problems with kids that are dyslexic. You’ll see these different kinds of minds. And then there’s a verbal mind, they know every fact about everything.
Another thing is the sensory issues.
I was really concerned about having to wear this gadget on my face. And I came in half an hour beforehand so I could have it put on and kind of get used to it, and they got it bent so it’s not hitting my chin. But sensory is an issue. Some kids are bothered by fluorescent lights; others have problems with sound sensitivity. You know, it’s going to be variable.
Visual thinking gave me a whole lot of insight into the animal mind.
Because think about it: An animal is a sensory-based thinker, not verbal — thinks in pictures, thinks in sounds, thinks in smells. Think about how much information there is there on the local fire hydrant.
The animal knows who’s been there, when they were there. Are they friend or foe? Is there anybody he can go mate with? There’s a ton of information on that fire hydrant. It’s all very detailed information, and, looking at these kind of details gave me a lot of insight into animals.
The animal mind, and also my mind, puts sensory-based information into categories.
Man on a horse and a man on the ground — that is viewed as two totally different things. You could have a horse that’s been abused by a rider. They’ll be absolutely fine with the veterinarian and with the horseshoer, but you can’t ride him.
You have another horse, where maybe the horseshoer beat him up and he’ll be terrible for anything on the ground, with the veterinarian, but a person can ride him.
Cattle are the same way. Man on a horse, a man on foot — they’re two different things. You see, it’s a different picture. See, I want you to think about just how specific this is.
This ability to put information into categories, I find a lot of people are Not very good at this.
When I’m out troubleshooting equipment or problems with something in a plant, they don’t seem to be able to figure out, “Do I have a training people issue? Or do I have something wrong with the equipment?”
In other words, categorize equipment problem from a people problem. I find a lot of people have difficulty doing that. Now, let’s say I figure out it’s an equipment problem. Is it a minor problem, with something simple I can fix? Or is the whole design of the system wrong?
People have a hard time figuring that out.
09:00 Let’s just look at something like solving problems with making airlines safer.
Yeah, I’m a million-mile flier. I do lots and lots of flying, and if I was at the FAA, what would I be doing a lot of direct observation of?
It would be their airplane tails. You know, five fatal wrecks in the last 20 years, the tail either came off or steering stuff inside the tail broke in some way. It’s tails, pure and simple.
And when the pilots walk around the plane, guess what? They can’t see that stuff inside the tail. You know, now as I think about that, I’m pulling up all of that specific information. It’s specific. See, my thinking’s bottom-up. I take all the little pieces and I put the pieces together like a puzzle.
Here is a horse that was deathly afraid of black cowboy hats. He’d been abused by somebody with a black cowboy hat. White cowboy hats, that was absolutely fine.
Now, the thing is, the world is going to need all of the different kinds of minds to work together. We’ve got to work on developing all these different kinds of minds. And one of the things that is driving me really crazy, as I travel around and I do autism meetings, is I’m seeing a lot of smart, geeky, nerdy kids, and they just aren’t very social, and nobody’s working on developing their interest in something like science.
And this brings up the whole thing of my science teacher. My science teacher is shown absolutely beautifully in the movie. I was a goofball student.
When I was in high school I just didn’t care at all about studying, until I had Mr. Carlock’s science class. He was now Dr. Carlock in the movie. And he got me challenged to figure out an optical illusion room.
This brings up the whole thing of you’ve got to show kids interesting stuff. You know, one of the things that I think maybe TED ought to do is tell all the schools about all the great lectures that are on TED, and there’s all kinds of great stuff on the Internet to get these kids turned on.
Because I’m seeing a lot of these geeky nerdy kids, and the teachers out in the Midwest, and the other parts of the country, when you get away from these tech areas, they don’t know what to do with these kids. And they’re not going down the right path.
The thing is, you can make a mind to be more of a thinking and cognitive mind, or your mind can be wired to be more social.
And what some of the research now has shown in autism is there may by extra wiring back here, in the really brilliant mind, and we lose a few social circuits here.
It’s kind of a trade-off between thinking and social. And then you can get into the point where it’s so severe you’re going to have a person that’s going to be non-verbal. In the normal human mind language covers up the visual thinking we share with animals.
This is the work of Dr. Bruce Miller. And he studied Alzheimer’s patients that had frontal temporal lobe dementia. And the dementia ate out the language parts of the brain, and then this artwork came out of somebody who used to install stereos in cars.
Now, Van Gogh doesn’t know anything about physics, but I think it’s very interesting that there was some work done to show that this eddy pattern in this painting followed a statistical model of turbulence, which brings up the whole interesting idea of maybe some of this mathematical patterns is in our own head.
And the Wolfram stuff — I was taking notes and I was writing down all the search words I could use, because I think that’s going to go on in my autism lectures.
We’ve got to show these kids interesting stuff. And they’ve taken out the autoshop class and the drafting class and the art class. I mean art was my best subject in school.
We’ve got to think about all these different kinds of minds, and we’ve got to absolutely work with these kind of minds, because we absolutely are going to need these kind of people in the future. And let’s talk about jobs.
OK, my science teacher got me studying because I was a goofball that didn’t want to study. But you know what? I was getting work experience. I’m seeing too many of these smart kids who haven’t learned basic things, like how to be on time.
I was taught that when I was eight years old. You know, how to have table manners at granny’s Sunday party. I was taught that when I was very, very young. And when I was 13, I had a job at a dressmaker’s shop sewing clothes. I did internships in college, I was building things, and I also had to learn how to do assignments.
All I wanted to do was draw pictures of horses when I was little. My mother said, “Well let’s do a picture of something else.” They’ve got to learn how to do something else. Let’s say the kid is fixated on Legos. Let’s get him working on building different things.
The thing about the autistic mind is it tends to be fixated. Like if a kid loves racecars, let’s use racecars for math. Let’s figure out how long it takes a racecar to go a certain distance.
In other words, use that fixation in order to motivate that kid, that’s one of the things we need to do. I really get fed up when they, you know, the teachers, especially when you get away from this part of the country, they don’t know what to do with these smart kids. It just drives me crazy.
What can visual thinkers do when they grow up?
They can do graphic design, all kinds of stuff with computers, photography, industrial design.
The pattern thinkers, they’re the ones that are going to be your mathematicians, your software engineers, your computer programmers, all of those kinds of jobs.
And then you’ve got the word minds. They make great journalists, and they also make really, really good stage actors. Because the thing about being autistic is, I had to learn social skills like being in a play. It’s just kind of — you just have to learn it.
And we need to be working with these students. And this brings up mentors. You know, my science teacher was not an accredited teacher. He was a NASA space scientist. Some states now are getting it to where if you have a degree in biology, or a degree in chemistry, you can come into the school and teach biology or chemistry. We need to be doing that.
Because what I’m observing is the good teachers, for a lot of these kids, are out in the community colleges, but we need to be getting some of these good teachers into the high schools.
Another thing that can be very successful is there is a lot of people that may have retired from working in the software industry, and they can teach your kid.
And it doesn’t matter if what they teach them is old, because what you’re doing is you’re lighting the spark. You’re getting that kid turned on. And you get him turned on, then he’ll learn all the new stuff. Mentors are just essential.
I cannot emphasize enough what my science teacher did for me. And we’ve got to mentor them, hire them.
And if you bring them in for internships in your companies, the thing about the autism, Asperger-y kind of mind, you’ve got to give them a specific task.
Don’t just say, “Design new software.” You’ve got to tell them something a lot more specific: “Well, we’re designing a software for a phone and it has to do some specific thing. And it can only use so much memory.” That’s the kind of specificity you need.
16:10 Chris Anderson: Thank you so much for that. You know, you once wrote, I like this quote, “If by some magic, autism had been eradicated from the face of the Earth, then men would still be socializing in front of a wood fire at the entrance to a cave.”
16:26 Temple Grandin: Because who do you think made the first stone spears? The Asperger guy. And if you were to get rid of all the autism genetics there would be no more Silicon Valley, and the energy crisis would not be solved. (Applause)
CA: So, I want to ask you a couple other questions, and if any of these feel inappropriate, it’s okay just to say, “Next question.” But if there is someone here who has an autistic child, or knows an autistic child and feels kind of cut off from them, what advice would you give them?
16:55 TG: Well, first of all, you’ve got to look at age. If you have a two, three or four year old you know, no speech, no social interaction, I can’t emphasize enough: Don’t wait, you need at least 20 hours a week of one-to-one teaching.
You know, the thing is, autism comes in different degrees. There’s going to be about half the people on the spectrum that are not going to learn to talk, and they’re not going to be working Silicon Valley, that would not be a reasonable thing for them to do.
But then you get the smart, geeky kids that have a touch of autism, and that’s where you’ve got to get them turned on with doing interesting things.
I got social interaction through shared interest. I rode horses with other kids, I made model rockets with other kids, did electronics lab with other kids, and in the ’60s, it was gluing mirrors onto a rubber membrane on a speaker to make a light show. That was like, we considered that super cool.
17:42 CA: Is it unrealistic for them to hope or think that that child loves them, as some might, as most, wish?
TG: Well let me tell you, that child will be loyal, and if your house is burning down, they’re going to get you out of it.
CA: Wow. So, most people, if you ask them what are they most passionate about, they’d say things like, “My kids” or “My lover.” What are you most passionate about?
TG: I’m passionate about that the things I do are going to make the world a better place. When I have a mother of an autistic child say, “My kid went to college because of your book, or one of your lectures,” that makes me happy.
You know, the slaughter plants, I’ve worked with them in the ’80s; they were absolutely awful.
I developed a really simple scoring system for slaughter plants where you just measure outcomes: How many cattle fell down? How many cattle got poked with the prodder? How many cattle are mooing their heads off? And it’s very, very simple.
You directly observe a few simple things. It’s worked really well. I get satisfaction out of seeing stuff that makes real change in the real world. We need a lot more of that, and a lot less abstract stuff.
18:49 CA: When we were talking on the phone, one of the things you said that really astonished me was you said one thing you were passionate about was server farms. Tell me about that.
TG: Well the reason why I got really excited when I read about that, it contains knowledge. It’s libraries. And to me, knowledge is something that is extremely valuable. So, maybe, over 10 years ago now our library got flooded.
And this is before the Internet got really big. And I was really upset about all the books being wrecked, because it was knowledge being destroyed. And server farms, or data centers are great libraries of knowledge.