The Autistic Journalist

Using words to explain the mind

Posts Tagged ‘Asperger Syndrome

Autism, it’s in our genes

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At least according to a new study that was published in the June 10 issue of Nature. U.S. News & World Report also reported the findings, which could serve as the next step in finding an indisputable cause for autism.

The study pinpoints genetic abnormalities in people with autism spectrum disorder versus people who aren’t autistic. DNA segments are either missing in autistic people or carry a segment repeated several times, known as copy number variations (CNV). On average, autistic people had 19% more CNVs that unaffected individuals in the study, and most CNVs in autistic people were inherited from their parents. Scientists involved in the study say the findings confirm a hypothesis that autism has hundreds of genetic risk factors. However, they say knowledge of genetic abnormalities will also improve treatments for the disability.

Obviously, one study can’t and won’t answer every question out there. However, applying this new information may ultimately have an effect on contemporary topics involving the autism community. A genetic risk for autism would counter the idea that vaccines are the culprit since DNA is constructed long before a child is born. Suggesting genetic factors could also lead to genetic testing for the condition. Controversial as they may be, considering the concerns people have about insurers or employers getting a hold of that information, I doubt autism would ever go that far. If further research supports the findings of this study that autism may be passed genetically to kids, even if parents are nowhere near the spectrum (and virtually none are), it may affect decisions about raising kids. I’ve lost count as to how many times I hear parents metaphorically equate an autism diagnosis with a cancer diagnosis when they find out for the first time. While finding a specific percentage of parents who succumb to fears is virtually impossible, in theory, there’s a possibility if they can get an answer in advance.

The scientific facets of autism will never bore you if you’re looking for a continuously evolving topic. If the urine test I blogged about yesterday does indeed become widely available, coupling the biological test with new information on genetic sequencing would increase accuracy of diagnosing autism significantly. Even though most articles I’ve discussed on this site since the year began focus more on the human interest perspective, that doesn’t mean the science is ignored. Popular press just won’t saturate their coverage with scientific stories since, especially for electronic stories, they’re harder to visualize and communicate to the audience. Stories about overcoming symptoms, accommodating the autism community, and new ways to help them adapt to the rest of the world are far more interesting to the non-scientific audience. However, it’s science that will truly progress our knowledge and approach to the autism community. Perhaps it’s time to bring back Bill Nye 😛

Written by TheSportsBrain

June 10, 2010 at 11:33 am

Visualizing a singular identity

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Perhaps the most in-depth article I’ve read on autism since I began the blog. An article from the New York Times performs an extended look into the possibility of removing Asperger Syndrome and replacing it with simply autism spectrum disorder. A panel of 13 experts are evaluating autism and other neurological disorders for the new psychiatric diagnostic manual due in 2012. Their argument is that Asperger as a label is confusing and not very useful as psychiatrists shift from a “black and white” view of neurological disorders to a continuum with many levels of severity. Potential controversies are also discussed, as insurers, schools and researches all account for Asperger Syndrome. Australian psychologist Tony Attwood and Temple Grandin, America’s best-known autistic, also suggest keeping the term. Attwood’s concern is that removing Asperger Syndrome as a medical label may inhibit people on the spectrum from being assessed, due to the negative connotations of autism versus Asperger Syndrome.

This article highlights the controversies surrounding autism, from accounting for social setbacks and skills possessed by few others to constantly changing labels and the myriad of other health problems that often accompany autism (if only receding hair lines were included :-p ).

This is the first article to use percentages to explain how many kids have autism based on federal data. This is also the first article in some time that doesn’t provide the textbook definition of autism or Asperger Syndrome, but summarizes the disability in a way the mainstream can understand. I discussed the significance of both findings in a post I made in October reporting the government studies, suggesting the diagnosis rate was climbing. The New York Times may be considering the increase of awareness from the increase in autism stories and their reporters are electing not to define autism in the classic sense. The public is starting to catch on.

What this article also does is underscore the individuality within autism itself, an angle seldom seen in popular press. Most stories told through electronic media often group all autistic people together, not accounting for the abilities that astonish adults and bore playmates to tears. Autism Speaks’ Autism Every Day, released three years ago, is an example of lumping everyone to a single unit. With the proposed changes and almost certain debate forthcoming, we get to look into…GASP…differing opinions within the autism community. Some prefer keeping the Asperger name while others have lived comfortably with the autism label. Instead of a two-sided debate with a for and against side, the Times turns the story into a multi-perspective discussion with the scholarly medical side blending with the real-life side, a useful approach since the autism debate nearly matches autism itself in complexity.

On the surface, the article reports a very detailed discussion and debate over a possible exchange in terminology when diagnosing autism in kids and adults. Beyond that could be the beginning of the next stage of social discussions surrounding autism: self-identification. Detailed in modern media including True Blood and X-Men 3: The Last Stand, autistic people with enough cognitive abilities to process thoughts are now asking themselves who they are and who gets to decide how they live. This is no different from anyone else or any other group subjected to the prejudices of privilege and 20th century thinking, but the New York Times story is the first to profile what could be an autistic identity crisis.

Written by TheSportsBrain

November 4, 2009 at 11:44 pm

iPod + iLessons

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Courtesy David Joles, Star Tribune

Courtesy David Joles, Star Tribune

OK, so Apple hasn’t developed an educational technology with that name, but that didn’t stop Fraser Child & Family Center in Minneapolis from experimenting with iPods.

Located near the U of M campus, the staff didn’t go on a music binge. They purchased iPods for people who are part of the Asperger’s treatment program. Asperger’s Syndrome is on the autism spectrum, which means these kids often have the same difficulties as people who are more severely affected. The difference between classic autism and Asperger’s is intellectual abilities. Classic autistics often lag behind their neurotypical peers in terms of speech and communication development. Asperger’s kids equal and sometimes surpass their peers, but retain difficulties in social awareness, making integration sometimes more challenging.

Fraser created video lessons to help rectify that problem. Participants can download them into their iPods and watch them as much as they want at any time. The idea surfaced when the Fraser staff noticed Asperger’s students already used iPods as a calming device from other distractions.

One advantage highlighted in the article is the program’s inconspicuous nature. The rest of us likely won’t guess that a teen or anyone else on the spectrum will pull out their iPod to watch a video on the intricacies of interaction.

Ironically, I’ve never owned an iPod because its use as a calming force almost works too well. iPods are a prime target for thieves because listeners won’t hear anything suspicious, especially if an owner wears its distinctive ear buds. But that doesn’t mean this idea should be abandoned. Fraser’s iPod project is just one example of how new media can influence society as a whole in ways we may not consider on a daily basis.

Also ironic is that I did a story on Fraser, although it was more a profile piece, and the people I talked to wouldn’t let me near anyone who was enrolled in their services. Perhaps my approach or my medium (this was for my TV news reporting class at the U of M) affected their thoughts.  There is HEPA, designed to protect the privacy of people’s medical records. In other words, there’s a rulebook. However, like anything else that involves media, there’s the giant grey area of how those rules are interpreted. Some are strict, some are loose, and sometimes two people will carry vastly different definitions after reading the same book. I doubt I would have come across this specific story, but when I chose to pursue a story on Fraser last fall, my goal was to produce something similar to what Maura Lerner did for the Star Tribune. Lerner’s article shows what can happen when you give people an opportunity to do a story their way.

At least Fraser is willing to open up.

Written by TheSportsBrain

July 26, 2009 at 6:56 pm

A little “Sheldony?”

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Leonard, left, and Sheldon discuss a matter on CBS' hit The Big Bang Theory

Leonard, left, and Sheldon discuss a matter on CBS' hit The Big Bang Theory

I mentioned in my last post that my co-worker told me I was exactly like Sheldon Cooper from the CBS show The Big Bang Theory, and an argument can be made. In fact, there’s a lot of discussion going on about the character played by Jim Parsons and if he is indeed on the spectrum. One of the creators considers it coincidental and Parsons himself said his character isn’t on the spectrum as far as he knows, but Sheldon may display more facets of the disorder in future seasons (the show was picked up for two more seasons on CBS and will now follow its sister show, Two and a Half Men).

I talked about this revelation in an interview I did for the next installment of my autism documentary series. My neighbor and I discussed the potential for a flagship character autistic people can identify with on primetime television. While Sheldon’s behavior continues to show signs of Asperger Syndrome (his intelligence is high, but his social skills are non-existent), creators Chuck Lorre and Bill Prady ultimately may not make the distinction official in the show’s canon. Although the show doesn’t make baffoons out of the nerdy nature of Sheldon and his highly intellectual friends, my neighbor and I thought there’s a chance that if the writers did decide he was on the spectrum, some members of the autism community could interpret such a development as making fun of autistic people. As the show enters its third season in the fall, I think more people will get a glimpse of what an autistic person might process in his or her mind.

I wouldn’t be surprised if the creative team does explore the autistic realm with Sheldon as more people question the creators and Parsons about Sheldon’s presumably autistic behavior. As the fanbase and ratings continue to increase, I haven’t seen any backlash from viewers about the behavioral patterns of any character. Anecdotally speaking, fans I’ve talked to say Sheldon helps make the show what it is, suggesting that people aren’t taking this as mocking autistic people. Spock and Data may get some competition as icons of the autism spectrum before long.

Written by TheSportsBrain

June 1, 2009 at 10:53 am