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Geekiness and autism: Is there a connection?

02:58 PM ET
Geekiness and autism: Is there a connection?
Elizabeth Landau

http://geekout.blogs.cnn.com/2012/04/23/geekiness-and-autism-is-there-a-connection/

Laura Nagle loves physics. She peruses scientific papers for her own enjoyment, and she can sometimes work out the answers to cosmological mysteries in her head when she watches documentaries about the universe. She has read, in her estimation, about 12,000 books.

You might say Nagle, 58, is a geek. But if you knew that she also has had severe problems communicating with others throughout her life, and had trouble in school because she’s not “well-rounded,” you might guess that she also has autism.

“I find that physics, engineering – these things speak to my heart, and I see details, relationships and patterns that most people don’t,” says Nagle, who lives near Flagstaff, Arizona.

Nagle’s experience speaks to a pervasive stereotype in popular culture that people with high-functioning autism – a form of which is called Asperger’s syndrome – are geeks.

As with most generalizations, it excludes a vast swath of people on the autism spectrum who don’t fit it – plenty have interests or talents in the arts or literature, and don’t care at all about traditionally geeky pursuits such as computers, science and technology.

But it’s worth looking at why this image of the geek with autism has emerged, and exploring the realities of how autism and talent intertwine. Understanding the condition better is ever more important as the number of people with autism rises. The main signs and symptoms of the condition are communication problems, poor social interactions and repetitive behaviors.

Just last month, the Centers for Disease Control and Prevention announced that an estimated one in 88 children in the United States have an autism spectrum disorder. A person who has high-functioning autism and did not have a childhood delay in cognitive or language development would get a diagnosis of Asperger’s syndrome, although this distinction is likely to disappear in the next edition of the Diagnostic and Statistical Manual of Mental Disorders, the standard classification of mental disorders used by mental health professionals in the United States.

Diagnosing genius

While more and more American children are found to have an autism spectrum disorder, speculation has abounded about brilliant historical figures and fictional characters having it, too.

Albert Einstein and Isaac Newton, both fundamental in shaping the way we understand the universe, had characteristics of Asperger’s, researchers have postulated.

Then there’s TV – take Sheldon Cooper, a character from “The Big Bang Theory.” (Although the show’s writers have said that the character does not have Asperger’s syndrome, actor Jim Parsons told Variety that he views his role as in line with the condition.) And people with Asperger’s have connected with the quirky behaviors of Dr. House from “House, M.D.” and Temperance “Bones” Brennan of “Bones,” although these characters have not received formal diagnoses. (For that matter, another doctor on “House, M.D.” once concluded that House is simply a jerk.)

All of these characters seem obsessed with scientific inquiry, but they struggle with effective communication or maintaining relationships. (Not to mention Abed from “Community” – he’s got an encyclopedic knowledge of science fiction, but asked in a recent episode, “Is this a social cue?”)

“[Viewers] could look at any of these characters who are ostensibly Aspies, and they could think that we have no passion because sometimes our language doesn’t seem to convey deep emotions, and we are doing things that most people do not seem to find inspiring of passion,” Nagle said.

And Nagle doesn’t mind that the public associates genius characters with autism – to her, they represent an idea she’s passionate about: That there’s room in this world for everyone, regardless of their quirks and social deficits.

“You get this idea that even if Sheldon is not a party guy, even if Sheldon is not the guy you’d want to have trying to repair your car, that maybe it’s important to have a theoretical physicist or two,” she said.

Others say the stereotype of the Asperger’s scientific genius is unfortunate; that it overshadows the fact that many people with high-functioning autism have talents in arts and literature instead, says Teresa Bolick, a licensed psychologist who specializes in neurodevelopmental disorders. And some are not geniuses per se, they are simply fixated on specific interests.

In other words, not all smart people have Asperger’s, and not all people with Asperger’s have great talents. The diagnosis requires that the person have some kind of social impairment – for instance, lack of eye contact, and not being able to interpret facial expressions, gestures and figurative speech. So a physics genius who gets along well with everyone may well not have autism.

A genetic basis for both scientific talent and autism?

There may still be an underlying connection between scientific talents and autism, however.

More study is needed to back up this theory, but one hypothesis is that geeks and people with autism are linked genetically. British autism expert Simon Baron-Cohen and colleagues published a study in 1997 suggesting that fathers and grandfathers of children with autism were more likely to work in the field of engineering, compared with fathers and grandfathers of neurotypical children.

The researchers are expanding upon their study to see if people who are good at computers and science are generally more likely to have a child with autism.

“One possibility is that the very same genes that give rise to autism, in a less severe combination, might also be giving rise to talent in the general population,” said Baron-Cohen, who is a first cousin of the comedian and actor Sacha.

A larger combination of those genes could give rise to more severe forms of autism, Baron-Cohen speculated. And it could be that people who carry those genes, being similar in personality and interests, have a greater likelihood of marrying each other.

“If you were to get rid of all the autism genetics, there would be no more Silicon Valley,” Temple Grandin, a best-selling author and professor of animal science at Colorado State University, who has autism, said in a TED talk in 2010.

Although these ideas have gained traction, they aren’t based on proven scientific facts; further research is necessary to support these conclusions.

And keep in mind that as awareness grows about autism, doctors have realized that intellectual disability in autism is nowhere near 70%, as was previously thought – it’s only around 30%, Dr. Gary Goldstein, president of the Kennedy Krieger Institute, told CNN.

A darker side of the stereotype

Meanwhile, the false notion that all people with high-functioning autism are talented in the sciences persists culturally – and that may have a detrimental effect on parents.

“Many of us in the autism community, with official diagnoses, are often asked ‘What’s your special science ability?’ says Christopher Scott Wyatt, assistant professor of English at Robert Morris University. “I say, ‘I teach poetry.’ ”

When speaking about autism, Wyatt, who has high-functioning autism, often fields questions from parents of children on the spectrum who wonder when they will see a math or science ability come through. The answer is: Many children don’t have it. The stereotype of the geek with autism has this downside of making parents concerned if their children with the condition don’t excel at science.

“It leads to assumptions of magical abilities,” he said. “They’re expected to have traits they don’t have.”

Gretchen Leary, 26, of Boston, has Asperger’s syndrome and, like Wyatt, her passion is for writing, not the physical sciences. She also has other narrowly focused interests, such as Latin and marine biology. But although she’s not a tech geek per se, her job involves data entry and other repetitive tasks that appeal to her cravings for order and familiarity. See her iReport

Nagle also has particularities about things that are familiar – if you want to kick her out of a room, “paint it lavender,” she says.

So what is the difference between being a geek and having Asperger’s?

Experts are quick to point out that autism is a medical diagnosis, and “geek” is not – of course.

And in order to receive a diagnosis, a person must see a doctor, probably because he or she is suffering in some way. Being a geek is a cultural description, not a medical condition.

People with high-functioning autism may become depressed because they are failing at relationships or jobs, or anxious because of their social interactions. They may have severe difficulties communicating with other people that have led to troubles at home or the workplace. Leary says she’s had many misunderstandings with her spouse and still has more trouble with face-to-face communication than via phone.

Sensitivity to light and noise, another common feature of autism, has also been problematic for Leary. These sensory issues can also interfere with children’s socialization. Crowded, bright places like shopping malls, where young people often hang out, can feel overwhelming and isolate those who don’t want to be there, said Bolick, the psychologist.

Underlying the interests of many people with Asperger’s is a fascination with systems, Baron-Cohen said. Sometimes, that can be advantageous and could help start careers, such as in software engineering or physics. But sometimes, people who have autism fixate on activities that do not have immediate practical applications – for instance, collecting coffee cups.

“Many folks with Asperger’s are able to give remarkable attention to whatever problem they’re interested in,” Bolick said.

Turning a disability around

In some cases, people on the autism spectrum have talents or interests that could become part of a profession, but they’re not thinking in those terms.

“For many people with autism, the reason why they have their obsessions is not because of financial gain. They’re doing it because of intrinsic motivation,” Baron-Cohen said. “The idea that they could make it useful may not even occur to them.”

Wyatt, for example, writes a lot but doesn’t publish. “My wife keeps saying, ‘You should send this to someone,’ but why?” he says.

One man with Asperger’s whom Baron-Cohen met had a desire to understand changes in weather patterns. He’d go out into his garden at midnight every night to measure temperature, wind speed and other related weather factors. He wasn’t trying to use the information like a meteorologist; he just wanted to know.

Similarly, a young patient of Bolick’s would diligently do his homework but not turn it in. When she asked him about it, he stood straight up and said, “I don’t do my homework to get good grades. I do my homework to learn.”

But this problem of not finding practical uses for interests varies widely; some people with autism are markedly driven to achieve, and do. Other times, success is hindered by difficulty in planning and organizing, another common feature of autism spectrum disorders. These are areas that teachers and coaches can help with, Bolick said. Grandin has also spoken out about the need for these mentors to help people with autism develop their talents and use their interests in meaningful ways.

And organizations are starting to take note of certain strengths that a person with high-functioning autism might bring. The nonprofit Aspiritech, based in Highland Park ,Illinois, provides opportunities for people on the Asperger’s spectrum to become software testers, a profession that harnesses their “attention to detail, precision, an affinity for repetitive tasks, outstanding technology skills.”

“This is the kind of disability which could be turned around, so that something that seems to be interfering with the person’s life could transform their life,” Baron-Cohen said. “The obsessions could be a stepping stone or a passport into more opportunities.”

Toward a better future for the next generation

Doug Sparling, 52, of Kansas City, Missouri, chose his job in software engineering because of his Asperger’s. Human interaction, especially when working on a project closely with a partner, can trigger anxiety for him. But he loves electronics, logic and solving problems.

In information technology, he can follow those passions while largely having the solitude he wants. He works more than 40 hours a week, but on a flexible schedule, and works from home a lot.

“Coding is something I get ‘lost’ in, it’s a world where I lose track of time,” he said in an e-mail.

Sparling is married with four children, including a 23-year-old stepson and a 12-year-old son with Asperger’s.

Nagle’s story is different. If she’d had supportive, encouraging teachers, coaches or advocates, Nagle believes, she would have turned her passion for physics into a career, too.

During her second year of college, a counselor told her that her grant would be cut and her work-study hours cut in half. And instead of questioning it or investigating other scholarship opportunities, she quit school and began one of many jobs she didn’t enjoy.

She has worked in architecture and structural engineering, but never finished college. She now lives in a mobile home provided to her. She is heavily involved in autism advocacy and is working on a documentary to be released this year.

When Nagle gives talks about autism, she tells her audience she hopes that none of the young people with autism today end up like herself.

She says: “I don’t want them being 58 years old, homeless [if not for] favors, not able to take care of their teeth, and looking back on lives in which they haven’t accomplished what they could have accomplished.”

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This website is educational. Materials within it are being used in accord with the Fair Use doctrine, as defined by United States law. §107. Limitations on Exclusive Rights: Fair Use
Notwithstanding the provisions of section 106, the fair use of a copyrighted work, including such use by reproduction in copies or phone records or by any other means specified by that section, for purposes such as criticism, comment, news reporting, teaching (including multiple copies for classroom use), scholarship, or research, is not an infringement of copyright. In determining whether the use made of a work in any particular case is a fair use, the factors to be considered shall include:
the purpose and character of the use, including whether such use is of a commercial nature or is for nonprofit educational purposes;
the nature of the copyrighted work;
the amount and substantiality of the portion used in relation to the copyrighted work as a whole; and
the effect of the use upon the potential market for or value of the copyrighted work. (added pub. l 94-553, Title I, 101, Oct 19, 1976, 90 Stat 2546)
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Genetic link between autism and prodigy

from A genetic link between autism and prodigy? By Renee Morad
The Daily Dose, Ozy.Com, Mar 15, 2017

Ohio State University psychologist Joanne Ruthsatz, author of The Prodigy’s Cousin, once tested a child prodigy’s IQ. In the middle of her assessment, the child asked for a break at McDonald’s. As they were eating, the child genius’s autistic cousin walked in, and the coincidence made Ruthsatz wonder: What are the chances of having a child prodigy and an autistic child in the same family?

The question motivated her to find some answers. So she went on to study prodigies who reached a professional level before age 10. After examining their DNA, and those of their families, she discovered that half of prodigies had an autistic relative as close as a grandparent or niece. She also found that both the prodigies and their autistic relatives seemed to have evidence of a genetic mutation or mutations on the short arm of chromosome 1 that was not shared by their neurotypical relatives. The two also shared some characteristics.

We caught up with Ruthsatz to talk about how her findings might help answer questions about autism. Our condensed and edited conversation follows.

HOW MIGHT THE LINK BETWEEN PRODIGY AND AUTISM HELP US BETTER UNDERSTAND BOTH TRAITS?

Ruthsatz: Well, if we could find how they are different from their neurotypical relatives, that would lead the way to better medicine for autism. What we’re looking for is a genetic marker that prodigies have that their neurotypical or autistic relatives do not have. More than 50 percent of children who are prodigies have autistic first or second relatives. That’s way too much. It’s a big marker, a big flag. Now we’re working to find out where the difference is, since we know where the similarity is.

WHAT STRENGTHS DID YOU FIND AMONG PRODIGIES WHO EXCEL IN MATH AND SCIENCE?

This group had huge visual-spatial skills. They were able to see visually and report the difference, telling exactly how to get from point A to point B and, miraculously, whether it was northeast, left, right or so on. I didn’t cue them; they just knew. But artistic prodigies were below average on this skill. Some of the artistic prodigies couldn’t have told me left from right.

WHAT DID THE MUSIC GENIUSES EXCEL IN?

The music prodigies had the strongest memories. In fact, all music geniuses had a score above 99 percent on working memory. They had significantly better working memories than the other types of prodigies.

WHEN YOU COMPARED PRODIGIES AND THOSE WITH AUTISM, WHAT SIMILARITIES DID YOU FIND?

They all have an obsession in something, or what we’d call a “rage to master” in prodigies. They both have strong working memories. They all usually come from families that have engineers or scientists or professors. Well, not all of them, but more than you’d expect. Some come from very normal families, some working-class — and many have autistic relatives.

YOU UNCOVERED EVIDENCE THAT PRODIGIES HAVE A VERY EXTREME SENSE OF EMPATHY. CAN YOU EXPLAIN?

One of the prodigies started a charity that raised $8 million for children with neuro diseases. He was so in tune with these patients that he used to play little concerts for them in the hospital, and his efforts got bigger and bigger. He raised a lot of money for research. Another one focused on feeding starving children. They are very sensitive to the human condition. Now, with autistic individuals, there’s this misunderstanding that they don’t care, but I think they care so much that they don’t know what to do with it — they’re super sensitive.

WHAT DO YOU FIND MOST INTERESTING ABOUT CHILD GENIUSES?

They are just so extremely rare, and we’re almost seeing an evolution in genetic research that shows that as the world goes on, the gene pool changes. You can go back to Mozart, and he certainly had an autistic background, but we’re finding that more and more. I think we’re seeing an evolution of extreme talent.

WHAT DO YOU SUSPECT YOUR LATEST RESEARCH MIGHT LEAD TO?

We are hoping to arrive at the prodigy gene that allows all the deficits in autism to be put at bay, letting the talent shine through. We think it’s going to be one or two genes. We don’t think they will be massive genes that are different. We think it’s going to be a moderator that lets prodigies be social and live their lives functionally where autistic savants cannot … and finding that difference might lead to better medicine for people with autism.

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This website is educational. Materials within it are being used in accord with the Fair Use doctrine, as defined by United States law. §107. Limitations on Exclusive Rights: Fair Use

Notwithstanding the provisions of section 106, the fair use of a copyrighted work, including such use by reproduction in copies or phone records or by any other means specified by that section, for purposes such as criticism, comment, news reporting, teaching (including multiple copies for classroom use), scholarship, or research, is not an infringement of copyright. In determining whether the use made of a work in any particular case is a fair use, the factors to be considered shall include:

the purpose and character of the use, including whether such use is of a commercial nature or is for nonprofit educational purposes;
the nature of the copyrighted work;
the amount and substantiality of the portion used in relation to the copyrighted work as a whole; and
the effect of the use upon the potential market for or value of the copyrighted work. (added pub. l 94-553, Title I, 101, Oct 19, 1976, 90 Stat 2546)

Is a ‘Spectrum’ the Best Way to Talk About Autism?

In “The Atlantic” Rose Eveleth writes:

The terms “high-functioning” and “low-functioning” have no medical meaning. Nearly every expert I talked to referenced a common mantra in autism: When you’ve met one person with autism, you’ve met one person with autism. Which sounds nice, but is not particularly helpful when looking for meaning.

“With the spectrum, there’s a wide range, we’re still trying to figure out what that wide range means,” said Stephen Edelson, the director of the Autism Research Institute. “I don’t have a great answer. Scientific understanding of autism certainly continues to evolve,” said Paul Wang, the head of medical research at Autism Speaks. “I think there’s no one continuum necessarily,” says Lisa Gilotty, the autism-spectrum-disorders program chief at the National Institute of Mental Health. “It’s hard because … different people will break that up in very different ways, I’m not sure any of those ways are accurate.”

“It’s almost like if you look in the stars in the sky and say, ‘Oh, there’s Orion’s belt. And oh, there’s the Big Dipper.’ You could also look at the stars and say they cluster a different way. And I think that’s still where we are with autism,” said Jeffrey Broscoe, the director of the population health ethics department at the University of Miami.

And perhaps because the spectrum has no agreed upon poles, there is very little data about how autistic people might be distributed along the spectrum. Different studies measure things like intellectual disability, and verbal ability, and self-injurious behavior in certain populations, but researchers know very little about what the autism population looks like as a whole.

….ike so much of psychiatry, autism is a construct, a conceptual framework that will sooner or later outlive its usefulness. And the spectral characterization of autism might work for now, but it might not work forever.

“Right now the best way to approach autism is to think about it as a spectrum condition, but it’s quite possible that in the next 10 to 15 years, we’ll start understanding these better—not just genetics but the real pathophysiology,” says Broscoe. One day it might be lots of different diagnoses, each pinned to a specific cause or mutation or biological breakdown. Just as people once thought of all cancers as singular, and now think about and treat breast cancer and lung cancer and colon cancer differently. Autism, Broscoe says, “may look more like cancer one day.”

Roy Grinker, an anthropologist whose book, Unstrange Minds: Remapping the World of Autism, combines his personal experiences with an autistic daughter, and academic research into autism, laughed about the idea that autism was a single, “real” thing. “There’s not a real thing out there called autism! There are complex neural pathways that lead to different behaviors and traits that we have decided right now is best understood by a framework called autism. But I have no confidence that in 30 years we’ll still use the word autism.”

* * *

This isn’t to say there aren’t robust research efforts focused on autism. This year, the National Institutes of Health alone spent $189 million dollars on autism research. In 2014, President Obama signed a bill called the Autism CARES Act which promises $1.3 billion in federal funding for autism research over the next five years. In 2014, the organization Autism Speaks spent $21.2 million on autism research.

But most of the funding is for figuring out the causes of the disorder, trying to identify biomarkers and genetic clues, and attempts to understand potential environmental contributors. Very little of it goes to sorting out what the spectrum looks like and how the population is distributed along it.

But even looking at the data that does exist reveals that it’s tough to get a comprehensive look at gradients along the spectrum. For a while, experts might have said that the spectrum went from “high functioning” to “low functioning.” But those terms were never clearly defined. “We just don’t have good ways of measuring functioning-levels overall,” Anne Roux, a researcher at Drexel’s Autism Institute told me in an email. “For example, we know that 60 [percent to] 70 percent of people with autism have co-occurring health and mental-health diagnoses. Yet, there are really no measures that account for the role of co-occurring disorders in how people function.”

And even if you try to pick a more concrete measure, attempts to plot autistic people fall apart pretty quickly. Take the CDC data on intellectual impairment. In their most recent report, released in 2014 but using data from 2010, researchers found that 31 percent of 8-year-old children with autism qualified as intellectually disabled, with IQ scores below 70, and 23 percent qualified as “borderline” with scores between 70 and 85. But in their 2000 report, between 40 percent and 62 percent of children studied were considered intellectually disabled. So, are the majority of autistic people intellectually disabled? Or only one-third?

Part of why this information can be hard to track is due to changes in how autism is diagnosed and classified. The latest edition of the DSM, published in May of 2013, did away with Asperger’s syndrome, a condition often seen as existing just beyond one end of the autistic spectrum. People once diagnosed with Asperger’s have some of the same behaviors as autistic people do—repetitive behaviors, difficulties with social interaction—but often have far fewer problems with verbal language. Now that Asperger’s syndrome is no longer a diagnosis, some of those people fell into an autism diagnosis, and some were simply no longer considered disabled. Wang says that the shifting CDC numbers on intellectual disability reflect diagnosis, not an underlying truth about autism.

Is a ‘Spectrum’ the Best Way to Talk About Autism?