First published September 27, 2011.
These days autism appears to be the disorder du jour and headlines about the newest autism breakthroughs are everywhere. Sometimes filled with jargon or unfamiliar references, scientific news reports can make families feel as if they are listening to Charlie Brown’s teacher. In the face of such an incredible amount of noise, how does a concerned layperson know whether a reported discovery is significant?
Below are four quick things you can do to begin to put autism research headlines into perspective:
1. Pause: The first thing you may want to do is take 30 seconds to reflect on how far we’ve traveled as a community. Regardless of the importance of the specific results, the fact that any autism story is in the press is a remarkable thing. Every “discovery” about autism means there is someone, perhaps even half way around the world and speaking a very different language, that is working to help you. Contrast this to when your child was diagnosed 10-15 years ago—there were but a handful of dedicated scientists working on autism and there were practically no press reports about autism research. The autism community can take responsibility for this remarkable change. It is through the efforts of families and advocacy groups that autism has reached the general public’s awareness, more dollars are fed to autism science, and autism publications are now deemed worthy of widespread press coverage. The sudden deluge of reports on autism research is also indicative of the influx of federal and private research dollars that occurred five to 10 years ago—the prolonged life-cycle of research means that projects begun several years ago are finally beginning to pay off. So when hearing about any new research discovery, it’s worth stepping back and recognizing how far the world of autism science has come. Allow yourself the time to say a silent hallelujah.
2. Check the source(s): The source of a press report can sometimes provide clues to the importance of the results. Often you are reading a “press release” prepared by the institute that sponsored the work. Keep in mind institutional press offices are (understandably) under constant pressure to put out press releases to publicize the work done by their scientists, as this brings the notoriety that begets more research dollars. Unfortunately, the standard short format of press releases, along with the false belief that the general public cannot stomach scientific detail, usually results in the omission of the detailed back story, or scientific context, which is the very thing that will help scientific outsiders judge the importance of the new results. Together this has the sad side-effect of appearing to inflate the significance of the findings, with the press release punch line inevitably reading: “The Scientist from So & So discovered X, which may one day provide us with a cure for autism.“ You should therefore always check the source of what you are reading and preferentially look for reports of the story from outside sources. Moreover, if multiple media outlets are dedicating column length, air time, reporter hours or crawl space to the story, chances are greater that the discovery is of significance.
3. Find the context: Above all else, you should seek out credible news reports from trained science writers that take the time to provide the context of the new research findings. What was the particular scientific problem that the researchers decided to tackle? What was already known when they started? What did the results add? Exactly how are they related to an improved chance of helping someone with autism? Without answers to these questions, you’ll be hard pressed to decipher the true significance of the research. One particularly good outlet for reporting the context of new autism findings is the Simons Foundation website. Autism Speaks also maintains a blog on recent science news usually prepared from the What-Does-It-Mean-To-Me perspective. As an added bonus, they sometimes have the scientists responsible write about the discovery in their own words—even if these may sometimes veer into more complicated concepts, they can be the most engaging reports of all because they are less filtered through the lens of publicity. Finally, several journals are experimenting with podcasts directed toward wider audiences to help in understanding the real-world significance of research findings. The research journal Autism: The International Journal of Research and Practice has a new podcast series, for example.
4. Inform yourself: If you are especially motivated to learn about the specific merit of a news report, the best way is always to obtain the original science publication. The National Library of Medicine maintains an index of biological and medical journals called PubMed. Type in keywords and/or the last name of the lead scientist mentioned in the press report. (Press coverage is sometimes given prior to the actual release of the publication, so you may have to wait until PubMed has had the time to add it to its database.) If you find the paper, you can click on the title to get to the science abstract. These are freely available so you can print it out and bring it to your doctor or any scientifically-knowledgeable person to help you understand the technical details. To access the full research publication you can click the icon(s) to the right of the abstract (above “related citations”). Unfortunately, the majority of time free access to the full text is blocked by publisher copyright and you’ll be required to pay for the article—note that it’s precisely for this reason that Autism Speaks adopted a "public access" policy requiring its grantees to make the full text of their research publications available for free in a public repository called PubMed Central—although exceptions to this rule can be found by paying special attention to any additional links that say “Free Article.” An alternative to the PubMed database is the website of the science journal that published the research. The name of the publishing journal should be in the press report you read initially. This is very important. If there is no reference to the publication of the discovery, this is a big indication that the press is reporting preliminary findings, perhaps announced at a research conference, which are not yet fully-developed or scientifically-vetted. Always treat the significance of such reports with healthy skepticism!
The previous sentence is perhaps the most germane of all—the best way to navigate the sea of TV and Internet headlines is to think like a scientist and become a skeptic. Scientists are trained to be critical and have faith only in peer-reviewed published data (and even then, the data must be considered intriguing at best until the results are independently replicated). If something someone is claiming seems too good or too simple to be true, it probably is.
However, as a non-scientist, just because something you read has yet to impact your day-to-day, you must not immediately assume it isn’t relevant. Although a lot of us are waiting for an explosive result, in reality, well-done research is mostly an iterative process, with every published finding, no matter how little or how big, illuminating a next step. And that’s what the headlines are really telling us—that after a decade and a half of waiting, those steps are FINALLY coming fast.
Despite the fact that approximately only one in 10 individuals with autism have savant syndrome (and approximately 50 percent of savants have an autism spectrum diagnosis), savant syndrome remains among the most mysterious and misunderstood aspects of life on the autism spectrum. The incidence of savant syndrome is an important, if enigmatic, piece in the puzzle of how the human mind works. In fact, Stephen Edelson of the Autism Research Institute has gone so far as to say that the field of cognition will be incomplete unless more light can be shed on the phenomenon of autistic savants. Similarly, Dr. Darold Treffert, a world-renowned expert on the subject of autistic savants who has published two books on the subject, says, “When I see some of these cases, I'm in awe of their ability, and struck by that [ability] in relationship to their limitations—and I wonder, 'What does that say about all of us, and about the capacity of the brain itself? What does it say about ability within us all?'”
What Does it Mean to be a Savant?
The original term for autistic savants was idiot savant. The term is French, meaning unlearned skill. Though idiot savant has been replaced by autistic savant in the scientific lexicon, it still appears in Merriam-Webster's dictionary, as “a person affected with a mental disability (as autism or mental retardation) who exhibits exceptional skill or brilliance in some limited field (as mathematics or music)—called also savant.” Treffert clears up the ambiguity in the definition by saying, “Not all autistic persons are savants, and not all savants are autistic. Dr. John Langon Down termed that condition 'idiot savant'—by which he meant, an individual with an IQ below 25, a knowledgable person in a specific area—now, it's a reprehensible term.”
Hence, when an individual is referred to as a savant, it can be difficult to tell whether or not the term is meant to signify a lack of functioning in other cognitive areas. Furthermore, there are degrees of ability inherent within the term savant itself. Treffert elaborates, “There are three levels of savant ability: First, there's something called splinter skills—this would be a case with someone who has a talent for memorization above the norm, for example. Then there's something called a talented savant—someone who has a marked talent in one area—and finally, there's something called the prodigious savant—someone with truly extraordinary gifts. There are fewer than one hundred known prodigious savants living, worldwide.”
Popular Conceptions of Savants on the Autism Spectrum
When most people hear the term autistic savant, their minds jump to the character of Raymond Babbitt, the focus of the film “Rain Man.” However, the person on whom the “Rain Man” main character was based, Kim Peek, was not actually diagnosed with ASD. (Raymond was a “composite character,” for whom Kim Peek was a primary inspiration.) In this case, one actor's role has become the basis for an entire cultural conception. Though Peek was not autistic, that performance may indeed deserve its place of primary association, as filmmakers took pains to present an accurate portrayal of savant syndrome and consulted with Treffert throughout the making of the film.
As Treffert recounts, “When the script for “Rain Man” came to Hollywood, they knew that I'd been working in that area, as my “Extraordinary People” book had just come out. They sent the script to me, and they said, we want the movie to be accurate, and to be sensitively done. And I feel they succeeded … all the scenes that you see in the film are based on the lives of actual individuals.” Furthermore, while some critics do not feel that “Rain Man” has earned its place as an iconic representation of the life of an autistic savant, the film has earned its place in the hearts of millions. Treffert captures the film's spirit of transformation and acceptance when he says, “The thing that I really like about the movie is this: Who really changed in that six-day tour? [Raymond's neurotypical] brother Charlie did. To make that change from, 'He's weird,' or, 'He's a retard,’ to, 'This is someone who is differently abled,' … that's key.”
Cultural Fascination with Savant Syndrome
While the release of "Rain Man" may have been the catalyst for the cultural fascination with savant syndrome, a small group of researchers were captivated by the syndrome long before the film was released in 1988. Treffert recalls how his own initial interest in savant syndrome was piqued by meeting Dr. Leo Kanner, a pioneer in the field of autism research. Treffert remembers hearing Kanner describe early infantile autism, and being intrigued by the descriptions he heard. After completing his residency, Treffert created a children's unit in the Winnebago Mental Health Institute, where he worked with individuals with savant syndrome. As Treffert says, “Three of them caught my attention. One had memorized the bus system in the city of Milwaukee; another was practically an almanac of everything that had happened on any given day in history; a third was mute and severely autistic, but you could put a two hundred piece jigsaw puzzle in front of him, picture side down, and he could assemble it based upon looking at the geometric shapes.”
Down, Treffert's predecessor in the field of developmental disability, had a similar introduction to the phenomenon in his work with developmentally disabled children. Treffert remembers a talk Down gave, recounting that early experience, “Down described 10 patients, 10 cases of savant syndrome in children—one boy had memorized “The Rise and Fall of the Roman Empire"; one would go to operas and come back singing the arias.” For both Down and Treffert, seeing such remarkable ability in an individual with developmental disabilities was astonishing. As Treffert says, “It struck me—how is that possible, to have this jarring juxtaposition of ability and disability in the same individual?” This initial question became a driving force behind his lifetime of research.
Scientific Explanation for the Occurrence of Savant Syndrome
There are a wide range of ability levels encompassed within the scope of savant syndrome. Much as individuals on the autism spectrum have unique and varied ability levels, no two individuals with savant syndrome have the exact same skill sets, or manifest those skills in precisely the same way. Whatever the skill may be, however, if the individual is a savant, their gift is always accompanied by a seemingly-impossible capacity for memorization. Scientists have categorized the skill sets most frequently found in individuals on the autism spectrum with savant syndrome into five general areas of ability: art, music, calendar calculation, lightening calculation, and visual/spatial skills. In most individuals with savant abilities who are on the autism spectrum, the giftedness is focused in skill sets such as mathematics and memorization—that is, right-brain-specific activities.
However, some savants, such as Daniel Tammet, have extraordinary left-brain-based abilities as well. Tammet is presently at work creating his own language, which does draw on his extensive knowledge and memorization of other languages (left-brain), but also employs his own special talent for linguistic creation (right-brain). That said, Tammet is an exception; for many savants, their giftedness seems to center in the right brain, often as a result of an injury or neurological condition which impairs left-brain function, or left and right-brain connectivity.
Modern researchers can utilize advances in medical technology, such as CAT scans and MRIs, to study savant syndrome and autism spectrum brain functioning as well. These technologies have opened up new windows into the minds of those with savant syndrome. As Treffert observes, “If we are really going to understand autism and savant syndrome, then we need to see the brain at work. By comparing and contrasting normal function and autistic or savant function, we can learn a lot more about normal functioning and creativity.” Thanks to modern imaging technology, researchers have learned that, when faced with neurological dysfunction, the brain can undergo a process which entails recruitment, rewiring, and release. Treffert sums up that process by saying, “When this occurs, the brain 'recruits' undamaged areas, 'rewires' itself to that area, and with that rewiring comes a 'release' of dormant capacity.” Doctors have observed that, in many cases of savant syndrome, damage to an individual's left hemisphere results in significant right brain compensation.
For example, Peek was born with damage to his cerebellum, and without a corpus callosum, the connective tissue between the right and left brain hemispheres. (He was also diagnosed with Opitz-Kaveggia syndrome, a genetic disorder characterized by intellectual disability as well as physiological abnormalities.) However, it was not Peek's intellectual and developmental disability itself which formed the basis for his astonishing abilities. Instead, doctors posit that the disconnection between his cranial hemispheres may have formed the basis for his particular instance of savant syndrome. Current theories surrounding savant syndrome thus highlight the brain's remarkable capacity for adaptation—when injuries and abnormalities occur, savant syndrome can sometimes emerge.
Writing for the Wisconsin Medical Society recently, Treffert noted the work of behavioral neurologist Dr. Bruce Miller may prove to be extremely significant when it comes to our understanding of savant syndrome's neurological basis. Miller and his team have been focused on analyzing brain scans of neurotypical adults who have been diagnosed with a specific form of dementia and, subsequently, developed savant abilities. Intriguingly, Miller has been able to link their precise type of neurological abnormality with that of a teenage savant on the spectrum.
Likewise, Treffert's second book, “Islands of Genius,” explores the idea that savants are people who utilize areas of the brain that all of us possess, but seldom access. This theory is supported by cases of individuals who have undergone neurological trauma and subsequently gained extraordinary abilities. Treffert notes, “I've been at this [field of study] since 1962, but the cases [of savant syndrome] that I was studying then were congenital cases—situations wherein a developmental disability was present from birth. But, in about 1980, I began to learn about cases of people who were neurotypical, who had some sort of accident and gained savant abilities; that's called the 'acquired savant'. The big question is, how can you tap that potential without, say, having a stroke?”
Modern-Day Savants: Skills and Supports
How, indeed, can individuals access savant skills without undergoing a neurological trauma? Many individuals with savant syndrome have a history marked by neurological disruptions. Such was the case for Tammet, whose special gifts are believed to have been triggered by a childhood incidence of epilepsy. His prodigious skills in mathematics amaze doctors, but it is his creative ability, as well as his capacity to explain to neurotypical individuals how his mind works, that make him so unique. Likewise, savants such as Stephen Wiltshire (who has autism) are excellent examples of individuals who are supporting themselves through their extraordinary gifts. Wiltshire’s remarkable ability to memorize and recreate entire cityscapes has earned him world-wide fame. Wiltshire lives with family in London, and with their support, he owns his own gallery, publishes books, gives sizable donations to charity and earns considerable income through his art.
As Wiltshire's case illustrates, caregivers and parents play an essential, often-overlooked role in such autistic savant success stories. Treffert describes savant syndrome as a three-legged stool. The first leg is idiosyncratic brain function; the second is skill formation; and the third is support of the skill. The three-legged stool image highlights the need for a support person or team that can nurture natural ability, provide practical supports, and empower the individual with savant syndrome to learn and grow. “In watching caregivers over the last few decades, I've witnessed the power of care and love and concern,” Treffert comments. “I've learned as much about that as about synapses and neurons.” Treffert cites the Tailor Institute (which focuses on helping individuals on the autism spectrum to develop their savant abilities, and utilize those abilities in the workplace) and Hidden Wings (a volunteer-based organization that seeks to bridge the gap from adolescence to adulthood in autism services) as two organizations doing vital support work for autistic savants.
Although individual stories of prodigious savant syndrome continue to fascinate scientists, these instances are also discouraging in their rarity. One of the major challenges facing scientists researching savant syndrome is the fact that prodigious savants are few and far between, and located all over the world. As such, Treffert has developed a savant syndrome registry, which presently lists approximately three hundred savants on the autism spectrum from throughout the world, along with their differing skills, abilities, and limitations. Researchers in the field hope to utilize that data in order to study the phenomenon of savant syndrome as a whole, allowing for a much wider sample size than in previous, limited studies.
Still More Questions
While modern scientific research and technologies have shed light on the biomechanics of savant syndrome, larger questions of brain functioning in individuals with savant syndrome on the autism spectrum still remain. Likewise, questions of human capability are intertwined within discussions of savant syndrome; in studying the minds of savants, researchers hope they will eventually understand how neurotypical individuals can harness the brain's amazing and untapped capabilities.
Although more neurological and sociological research is needed to gain greater understanding of savant syndrome and autism alike, one thing is clear: Individuals on the autism spectrum with savant syndrome need to be both celebrated for their gifts and supported in their areas of need. In his decades of study, Treffert has met many families of individuals with autism and savant syndrome. He sums up the perspective of the parents, siblings, and caregivers he has encountered by noting,“They're not concerned about what's missing [in their loved one], they're excited about what's there.” And their excitement helps society as a whole to move toward a place of greater understanding and compassion.
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