July 5, 2010

A Lesson Relearned

Autism's Generation Gap

By STEVEN HIGGS

Every conversation I've had with parents of autistic Americans has been riddled with salient moments, when essential truths are revealed about this extraordinarily complex developmental disorder. "Ah ha!" moments, so to speak. Such was the case with my July 2 conversation with Lisa Roach, who lives just outside the Ohio River town of Mount Vernon, Ind.

I had driven to the Posey County capital with Bloomington Alternative intern Megan Erbacher, who had grown up just down the road and has been friends with Roach's daughter Chelsea since childhood. Stan and Lisa Roach's oldest, 26-year-old Travis, has Asperger's Disorder, which is commonly known as "high-functioning autism." While his symptoms had been evident for years, Travis wasn't diagnosed until he was 8. At that time, Lisa learned her son was the first autistic child in the Mount Vernon school system.

Through Megan, Lisa had agreed to share her family's story and, after a stopover in Rockport, Ind., to interview Rex Winchell, an 84-year-old activist who battles the Ohio Valley's economic dependence on coal-fired industrial plants, we drove past Megan's home and pulled into Lisa's driveway. The scene -- a one-story sandstone home on a tree-ringed, spacious plot with a pond that appears at first glance to be a small lake -- offers the sort of imagery that has inspired generations of Hoosier artists, from T.C. Steele to Darryl Jones.

We had spent about 50 minutes with Rex, who works at the Spencer County Hospice on the courthouse square, and would spend about a half hour more than that in Lisa's living room, talking with her and, off and on, Travis.

Needless to say, we covered an overwhelming amount of ground during our day in Southwest Indiana, and it's going to take some time and work to get these stories properly crafted. But there were a couple of salient moments worthy of quickie treatments, both of which reminded me of similar moments I've experienced over the past 20 months.

***

Travis is the first autistic person I've actually conversed with. Over the course of this project I've interviewed a half dozen parents with autistic kids; shaken hands with, observed and photographed a 22-year-old man with Autistic Disorder, also known as "full-blown autism," who lives in a group home in Indianapolis and requires professional care, 24-7; and shared space with (but only caught a fleeting glimpse of) a 15-year-old girl with Asperger's.

Travis was my conversational initiation, and our interaction was reminiscent of Cathy Pratt's observation back in February 2009: "If you know one person with autism, you know one person with autism." Cathy is director at IU's Indiana Resource Center for Autism and board chair of the Autism Society of America. Her point was that the range of symptoms that accompany autism are so disparate that no two individuals on the spectrum are alike. Each is unique.

I knew that one trait those with Asperger's and Autistic Disorder share are tendencies toward repetitive behaviors, so I wasn't surprised that Travis was in near-constant motion during our time together. As he arced 180 degrees around us in the expansive living room with picture-window view of the pond, back and forth, back and forth, Lisa observed with a resonant laugh: "We walk a lot of miles in a day."

I likewise understood that Aspies, as they are sometimes called, do not share many of the communication deficits that those with Autistic Disorder do. They are conversational and often are exceptionally intelligent, with keen minds for details.

Travis is into sports, for example, and much like Dustin Hoffman's autistic character in the movie Rain Man, he has instant and encyclopedic recall of historic details, from dates to stats to individual plays. He's a New York Nick's fan, and when the conversation turns to Reggie Miller and his spectacular play in the final seconds of a 1995 NBA Playoff game, Travis had the scorecard.

"It was in 1995, it was Game 1 of the Eastern Semifinals," he says. "They was at New York, and the Nick's led, I think, they led like 102-95 with less than 20 seconds." He didn't have the score exactly right, but his recall was perfect in every other respect, including Miller's legendary performance. The score was 105-99 (according to NBA.com) with 18.7 seconds left when Miller scored eight points in 11 seconds. The Pacers won 107-105 and went on to oust the Nicks, just as Travis had said.

I also knew that those on the Asperger's end of the spectrum lack appropriate skills in what mental health professionals call "social reciprocity." When it came time to say good-bye, Travis re-emerged from the basement where he was watching racing, darted into the room, made furtive eye contact, said good-bye and vanished as quickly as he had appeared.

But one trait that I had associated with Asperger's was an inability to listen to others. So, even though I knew that he has worked at McDonald's since high school and knows nearly everyone who comes in the place, I was surprised when Travis engaged me directly when we spoke. At that point, I realized I knew one person with autism.

***

The greatest "Ah-ha!" moment of the day for me was when I asked Lisa about the reactions she gets from others when Travis is out in public. While the family almost never went out when he was growing up, as Travis has matured, he's become amenable to forays into the real world. He is a fanatical race fan, and Stan and Lisa, both Posey County natives, often take him to NASCAR events in Bristol, Tenn. Family and friends take him to ball games.

In terms of negative reactions to Travis, Lisa casts the tale in generational terms. "There's a couple adults at McDonalds that's had problems with his talking," she says. But Chelsea and Megan's generation -- both are college seniors -- has grown up with the nationwide autism epidemic. More than one in four children in the Metropolitan School District of Mount Vernon -- 26.1 percent -- received special education services during the 2008-09 school year, according to Indiana Department of Education data.

"They don't think anything about them," Lisa says. "It's adults who have problems."

And that reminded me of another salient moment I experienced with the father of an elementary-aged boy with Asperger's. Only somewhat tongue-in-cheek, he suggested a day's worth of awareness-raising events where kids with autism mix with the public. His suggested title for the event:

"Get Over It, It's Autism."

Steven Higgs can be reached at editor@BloomingtonAlternative.com.

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