SPECTRUM CONNECTION

By Kate Duffy

For many with autism, being self employed is the best way to make a living. A couple of weekends ago, I visited Poppin Joe’s Kettle Corn at the Overland Park Farmer’s Market, a prime example of small business ownership being the way to go for people on the spectrum.

Now an entrepreneur, Joe Steffy, who has autism and is nonverbal, was encouraged by his school district to live in a group home and work in a sheltered workshop. However, Joe is now thriving making popcorn at Poppin' Joe's.

By Jeanne Holverstott, M.S.
Question: I often arrange for my son to have play dates with other kids his age. Inevitably, his brother, who is two years younger, joins them, and my older son ends up getting left out. Or, the friend will dump my son when another child enters the scene. How can we (or should we) stop this from happening?

Answer: If only I could count the number of times a parent has shared, “We don’t get calls for play dates.” Each time, the sentiment saddens me and, at the same time, creates hope. When the call does come, jubilation is quickly followed by anxiety. What will they do? Should they play video games? How long? Where?
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By Toni Lapp
Happy Father’s Day weekend to the fellows out there who are active in supporting their kids — particularly those kids on the spectrum. I’m impressed with the efforts of Jeff Nessel and Julius Karash, who have both contributed content to this site.
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By Jeanne Holverstott, M.S.

Q: What do you think about kids on the spectrum using Facebook? My son seems to be addicted it. He goes on and checks out what other kids post, yet never posts his “status.” Also, none of his connections seem to be true friends who call, visit, etc. What do you think of this?

A: You can’t judge a book by its cover, and this is the case with Facebook. On the surface Facebook, a social networking website highly popular among adolescents and adults, is a great thing: a website not related to an obsession, a website that allows an individual on the spectrum to make and interact with friends. Better than sliced bread, you might be thinking.
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University of Missouri researchers are participating in an initiative to gather and bank DNA samples from 3,000 autism patients over the next three years.

The Simons Simplex Collection Autism Research Initiative, expected to cost $10 million over its first two years, is being conducted by a consortium that includes: University of Michigan, Yale University, Harvard University, Boston University, Columbia University, Washington University, the University of Washington, the University of Illinois-Chicago, Emory University, McGill University in Montreal and the University of California, Los Angeles (UCLA).

The Simons initiative was launched by billionaire money manager Jim Simons and his wife, Marilyn, with the goal of investing $100 million toward research.

While there are core deficits that define Autism Spectrum Disorders (ASD) there is also a great deal of heterogeneity among children and adults with ASD in terms of behaviors, level of functioning and co-morbid conditions such as mental retardation or obsessive compulsive disorder.

Recent findings in the molecular genetics of autism and in family transmission patterns suggest that there are likely several, if not many, autisms. Researchers say it is important to identify subtypes of autism that are associated with risk factors or etiologies in order to develop appropriate treatments or prevention strategies.

Families interested in participating must meet these eligibility requirements:

• Have only one child with an autism spectrum disorder (ASD), between the ages of 4 and 17 years
• Additional child(ren) in family must be 4 years or older, and without ASD or significant developmental delays
• Both biological parents must be willing to participate

Research components, all at no cost to the family, include:
• Participation in a variety of interviews and diagnostic and neuropsychological assessments.
• All family members will have a blood test, a source of DNA.
• One visit to the research site in Columbia, Mo.

For more information about the project, contact Nicole Takahashi, Project Coordinator at the Thompson Center for Autism & Neurodevelopmental Disorders, by calling (573) 884-1893 or e-mailing takahashin@missouri.edu.

By Brian McTavish

Then 16, Ben Berlin of Topeka, seen posing next to a model of the U.S. Capitol, became the first person with an autism spectrum disorder to work as a Congressional page last summer.

Ben Berlin was just being himself when he landed a coveted government job last summer in Washington. But the Topeka area teen wound up making history while in the nation’s Capitol.

In June 2008, Ben became the first person with an autism spectrum disorder to work as a Congressional page.

“I’d have preferred less of the celebrity,” Ben says. “I don’t mind getting some media attention. But I was joking at the time that the only person who was more famous than me was the president himself.”

This summer, the 17-year-old high-school senior with Asperger’s syndrome is dealing with more interview requests as he eyes another appointment with history, this time on the international front.
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By Kate Duffy

Sometimes my students at the college worry about how long it is taking them to get through their course work.
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By Toni Lapp
My son’s grade card arrived yesterday. For most parents, the arrival of the end-of-year grades is an occasion to celebrate. I’m just happy if there are no F’s. (It’s sometimes hard to explain this to family and friends: “No, my kid’s not on the honor roll, but he passed all his classes.”)

This year the most heartening news was that Ryan had received high marks in not just one, but two, count ‘em, two classes — Economics and Naval Science (Junior ROTC). Both these classes were led by teachers with whom my son had a good rapport, confirming my belief that behavioral issues are reduced when students on the spectrum have a positive connection with the instructor.
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“I liken being in a relationship with a man with Asperger’s Syndrome to living in a climate where the sun doesn’t shine very often,” writes Rudy Simone, an Asperger’s educator. “When it does, it is dazzling, and you appreciate it so much more than someone who lives in a place where the sun always shines. You live for those moments of light.”
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Play is not a simple matter for children on the autism spectrum, who often need sustained direct instruction to learn to play with others. What makes their difficulties in this area particularly critical is that play is an important building block in later success in life at home, at school, at work, and in the community.

This revised edition of Pamela Wolfberg’s classic translates award-winning research into practice so that parents and other caregivers, teachers, etc., can help children gain the skill and confidence needed to play with others and ultimately go on to engage in more successful interactions with others as they grow older.
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