News from OAR

More than 1,000 People Meet to Advance the Future of Adults with Autism

On November 13, 2009, the Advancing Futures for Adults with Autism (AFAA) National Town Hall was held with the support and participation of OAR. For this, the first such meeting of its kind, more than 1,000 family members, professionals, adults on the spectrum, and community members gathered simultaneously, via live webcast, at 15 satellite locations across the country, as well as through an online virtual site.

AFAA is an information and advocacy organization, consisting of a number of leading organizations bound together to more effectively meet the needs of a maturing population of individuals with autism. The National Town Hall Meeting was orchestrated by AmericaSpeaks, a nonprofit organization with a mission of engaging citizens in the development and implementation of effective solutions for the toughest questions facing their community. In this case, the question was “How do we best meet the needs of adults with autism spectrum disorders (ASD) as they age out of the educational system?”

As autism prevalence continues to rise, the autism community is actively working to, in effect, look into the future and plan accordingly for adults on the spectrum. According to The Current State of Services for Adults with Autism, prepared by OAR President Dr. Peter Gerhardt, Ed.D., (http://nyc4a.org/pdf/oar_survey_11309.pdf), about 80 percent of individuals identified with an ASD diagnosis are under the age of 21. As those individuals enter adulthood, they and their families are faced with myriad challenges, including little if any funding; outdated services; a dearth of well-trained staff; and a consistent failure of the system to support lives of competence, dignity, and quality. The majority of these adults are, sadly, left to stay at home with few services and even fewer options.

Peter Bell, executive vice president for programs and services at Autism Speaks, summed up the situation in the participant guide, “The face of autism is rapidly changing with a generation of children who will be entering adulthood over the next five to 10 years. As a society, we are ill prepared to deal with what will be a boom in demand for housing, employment, and other critical services needed to appropriately serve adults living with autism. This initiative is an effort to create, with the input of a wide range of stakeholders, a useful and actionable public policy agenda.”

Meeting Proceedings

Attendees participate in Chicago

On the day of the National Town Hall, attendees sat at tables of 10, including a facilitator who kept the group on task and ensured that everyone had an opportunity to participate. As each group discussed each topic, a scribe (one scribe per group of 10) recorded the ideas and immediately forwarded them to a “Theme Team” in

Chicago, which served as the central meeting location for all 15 satellite meetings. At the conclusion of each conversation, the Theme Team shared any common themes repeated throughout the country. Attendees then used digital keypads to vote on priorities among the presented themes. The results of these votes were displayed on the screen for all to see and will be used to shape the final report, to be released in two months and presented directly to federal, state, and local policymakers, including members of Congress.

Attendees discussed four major topic areas: cross-cutting issues, housing, employment, and community life. Each topic was introduced with a five-year vision. They are:

1. Adults living with autism will have greater access to the building blocks of a joyful, productive, and independent life, which includes housing, employment, and community life.
   
2. Adults living with autism will have an increasing number of housing choices as the necessary underpinnings -- financial, educational, and political -- are put into place.
   
3. Adults living with autism will have a measurable increase in job opportunities, paired with ongoing training and support that enables them to be successful in the workplace.
   
4. Adults living with autism will have the opportunity to be valued, contributing members of their communities based on their unique strengths, differences, and challenges.

Each topic also included a summary of several different strategies to bring that vision to life. Groups were directed to discuss each strategy and record their impressions. The dialogue was incredibly stimulating and thought-provoking due to the diversity represented in each group. The many viewpoints shared at even one table gave everyone present a small inkling as to the sheer amount of information being collected in such a crowd.

While many priorities were uncovered through the process, several rose to the top:

• In cross-cutting strategies, many felt it was essential to change funding streams so that financial assistance follows the person. In addition, accessibility to necessary supports should be ensured, and the availability of qualified and motivated personnel should be increased.

• Two housing strategies that met with overall approval were to support person-centered service models and expand both public and private funding for residential services.

• Regarding employment of individuals, attendees throughout the country felt the need for support, both during school years in the form of vocational skills training and through adulthood in the form of employment supports.

• When discussing community-life strategies, nearly all agreed that one priority is essential--the need for first responders to be educated about the behaviors that might arise when encountering individuals with autism in emergency/first-response situations.

A preliminary report, distributed to attendees that day, summarized the day’s activities, including conclusions drawn and demographic information. To view the complete preliminary report, visit www.researchautism.org/resources/AFAAPreliminaryReport.pdf. The participant guide is also available at www.researchautism.org/resources/ParticipantGuide.pdf. For more information on AFAA and the Town Hall meeting, such as video clips, reports, and updates, visit AFAA’s Web site at www.afaa-us.org/site/c.llIYIkNZJuE/b.5063863/k.BE3C/Home.htm.

OAR President Presents to Autism Speaks’ Scientific Advisory Committee

On November 5, OAR President Peter Gerhardt, Ed.D., along with Marsha Mailick Seltzer, Ph.D., met with the Autism Speaks Scientific Advisory Committee (SAC) to discuss the needs of adolescents and adults with autism at the SAC’s annual meeting held on the campus of the University of North Carolina. Dr. Seltzer is the director of the Waisman Center at the University of Wisconsin-Madison and an internationally recognized author and researcher whose research interests include individuals with autism spectrum disorders (ASD) and their families as they age into adulthood. Dr. Gerhardt is one of the leading authorities on adolescents and adults with autism in the United States.

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Peter Gerhardt, Ed.D. President

Because the research on the needs of adults with autism is sparse at best, presenting some of the questions and challenges relevant to adults with autism and their families to this group of researchers in the field was an important opportunity. Dr. Seltzer emphasized that point when she presented longitudinal data from the Waisman Center that indicated that, over all, outcomes for adults with autism are far less positive than we would want to expect. The data are particularly disappointing given what we do know about developing effective transitions and the fact that the Individuals with Disabilities Education Act (IDEA) requires that an outcome-based transition plan be developed for each adolescent.

Dr. Gerhardt spoke about some of the factors that may impact effective transition in practice. Stressing that the poor outcome data are more a function of a significant systems failure than an actual failure of people with autism, Dr. Gerhardt noted that if transition planning is to be effective (at any age), it must incorporate intensive community–based instruction, direct attention to skills subsumed under the heading of adaptive behavior, and result in a significant degree of inclusion in the community where the person with autism lives.

Dr. Geraldine Dawson, Ph.D., chair of the Scientific Advisory Committee, expressed her support for the concerns put forth by Drs. Seltzer and Gerhardt and several committee members expressed their sincere appreciation for the quality of the presentations and the information provided. The general consensus seemed to be that since children with autism grow up to be adults with autism, we need to do all we can to make certain that they are able to lead lives of quality, dignity, and competence in adulthood.

OAR Chosen as Beneficiary for New “Songs of the Spectrum” CD

Unique Holiday Gift of Uplifting Music Lets Families Share Hope, Serves as Fundraising Tool for OAR

OAR was recently accepted as a beneficiary of the new SingSOS/Songs of the Spectrum CD, an album of original songs about autism. This new album can either be downloaded or ordered as a CD from www.singsos.org. With each purchase, the customer can choose OAR as one of 37 non-profit groups benefiting from the sales.

SingSOS/Songs of the Spectrum is a 501(c)(3) nonprofit organization that enlists the power of music to spread the word about autism spectrum disorders and the importance of early detection and intensive intervention. To drive this point home, its album and Web site features a hand-selected set of free, high-quality information, such as book excerpts, videos, and interactive tools for parents and educators about autism spectrum disorders. Also included in these materials are all five guidebooks in the Life Journey through Autism series published by OAR.

Songs on the album offer both a message of hope and an unflinching look at the realities faced by the families of individuals on the autism spectrum. The tracks are a collaboration between John O’Neil, a New York Times editor whose 2004 essay for the newspaper about his son with autism, James, was nominated for a Pulitzer Prize, and Jon Fried and Deena Shoshkes, a husband/wife team that perform as the Cucumbers.

Fried and Shoshkes are close friends of the O’Neil family and have witnessed firsthand James’ struggle and progress. One song was co-written by O’Neil’s oldest son, Chris, about the issues siblings face, and James contributed the final track, a poem about the different point of view of someone on the spectrum.

“This is different from other charity albums, which are usually compilations of unrelated songs. It takes a unified set of songs by writers steeped in the experience and puts them in the hands of some of the best vocalists and song interpreters of their generation,” says Fried. “The songs tell a cohesive story that affected families and others can follow. We’ve had listeners tell us ‘You are singing my life’ and ‘Now I feel less alone.’”

“Early intervention and dedicated, relentless treatment can have a genuinely transforming effect,’’ says O’Neil. “We want to bring listeners inside an experience that is so hard to see and so hard to understand. Autism has understandably been called an ‘invisible epidemic.’ We hope to make it tangible.” 

For more information, including a complete list of songs and artists, visit www.singsos.org.

Dr. Patricia Wright Joins OAR’s Scientific Council

Last month, OAR welcomed a new member to its Scientific Council. Patricia Wright,Ph.D., MPH, is the national director of autism services for Easter Seals. “The needs of individuals with autism are significant and are not being adequately addressed within the current array of services and supports. I hope my work with OAR contributes to increased, quality evidence being introduced to the field of autism that can result in improved lives of individuals living with autism,” she explains.

“Dr. Wright is a leader in the field of effective service delivery for individuals with autism,” says OAR President Peter Gerhardt, Ed.D. “When her nomination came before the Scientific Council, there was unanimous agreement in support of her membership.We enthusiastically welcome Dr. Wright to the OAR family.”

Wright leads autism spectrum disorders (ASD) programs for Easter Seals, the nation’s largest provider of services for individuals with autism across the life span and for their families. “I hope to contribute the knowledge that I glean from my daily work to furthering OAR’s mission.Each day, I hear stories from individuals and families living with autism that are demonstrative of the need for additional applied research to ensure every individual with autism has the ability to lead a high-quality life.”

Being chosen as a member of the Scientific Council is an honor, Wright says. “OAR has an esteemed reputation in the field of autism. The current members of the Scientific Council are remarkably accomplished within their fields of expertise. The opportunity to work with this group is truly a privilege.”

Having begun her career as a special educator in California, she brings her expertise as an ASD educator and board-certified behavior analyst and assistive technology practitioner to her work. She knows that early diagnosis and intervention offer the best outcomes, but also is a proponent of appropriate treatment for anyone with autism at any age. “Everyone has the ability to learn and develop skills,” she notes.

Wright is well known as a presenter at national and international educational and assistive technology conferences and has been invited to deliver workshops and presentations across the United States.

2010 Scholarship Application Period Opens Next Month

OAR will begin accepting applications for the 2010 Schwallie Family Scholarship program on January 1. The submission deadline for this year’s competition will be April 30, 2010.

These scholarships are for one academic year, $3,000 each, to be applied towards tuition, books, and other expenses associated with higher learning. This year, OAR is once again increasing the number of scholarships to be awarded through the Schwallie Family Scholarship Program from seven to 11.

To be eligible, students with an established autism or Asperger Syndrome diagnosis must be accepted for enrollment or pursuing undergraduate studies at an accredited institution of higher education in the United States during the fall 2010 semester. This can include four-year colleges or universities; two-year colleges; and trade, technical, or vocational training programs.

For more information, please visit OAR’s Web site at www.researchautism.org/news/otherevents/scholarship.asp.

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RUN FOR AUTISM News

Top Five Reasons to Run for OAR

It’s that time of year when we start thinking of resolutions for the new year, those lists of things we want to do for ourselves and others. While many include a pledge to become more active and healthier in the coming year, there is an easy way to benefit others at the same time. By running (or walking or shooting hoops or riding a bike) for OAR, you can help yourself and the thousands of individuals affected by autism and their families.

Here at OAR, we’ve been writing a list too, a list of top reasons why raising funds for OAR is important. Our resolution for the year is to be there—for people with autism, for all the people who work with us, and for you, our team that makes a difference. See you on the course in 2010!

• You make a difference. Eighty-five cents of each dollar raised by OAR through its RUN FOR AUTISM directly funds research studies focused on treatments and challenges faced by individuals affected by autism and their families. As a result, you have the ability to improve the lives of thousands of individuals with autism as well as their family, friends, and teachers.
• Big or small, we do it all. You can participate in a marathon with 45,000 runners as part of our team or run the local 5K with 45 runners and still be part of the RUN FOR AUTISM team through our iRUN for Autism program. And if running doesn’t suit you, you can walk, climb, ride, or shoot hoops to benefit autism research instead.
• Coming together. When you become part of the RUN FOR AUTISM team, you become a part of something larger than yourself. In 2009, a community of over 800 runners from all across the country joined the RUN FOR AUTISM team to help raise money for autism research.
• Gear up. As a member of the RUN FOR AUTISM team, you will receive a complimentary runner’s kit that includes a t-shirt, racing singlet, and helpful training tips as soon as your fundraising reaches $50.
• We are here for you. OAR’s RUN FOR AUTISM coordinators, Julia Hornaday, Jessica Hopey, and Lily Matusiak, are just a phone call or e-mail away from helping you with your fundraising or training goals. They are always happy to hear from and help our runners.

The Weather Will Likely Be Delightful So Join Us For a Spring Run Through NYC

There is something special about New York City in the spring. The snow thaws, trees in Central Park begin to bud, and the cab drivers seem to be just a wee bit friendlier. But on March 21, 2010, there will be a new addition to spring in the “city that never sleeps:” the New York City Half Marathon 2010. Formerly a summer event, this will be the first year the event will take place in the spring.

The New York Road Runners has again selected OAR to be an official charity partner for this popular event. Similar to past years, OAR receives a limited number of reserved charity entries so if you’re interested in what promises to be a fantastic run through one of the most famous cities in the world, reserve your spot today!

The 13.1 mile course will lead over 10,000 runners through a full tour of the city, beginning with a loop of Central Park before heading south through Times Square. Runners will make their way down the West Side Highway, finishing in Battery Park, located on the southern tip of the island. Of those making their way through the usually traffic-filled streets of New York, we anticipate seeing an even larger OAR team than last year, which was comprised of 45 runners raising almost $55,000.

Entries to this race are some of the most sought after in the country and understandably so. RUN FOR AUTISM Coordinator Lily Matusiak, a former New York City taxpayer and Upper East Side resident, was excited to learn that this year would be a spring race. “The Half has been an extremely popular race. But running in NYC in August can be a killer. The heat and humidity can take a toll on even the most experienced runners. I wouldn’t be surprised to see much happier, healthier runners this year and perhaps a course record.”

OAR is honored to participate in the event for the fourth year, receiving reserved charity entries for our always impressive runners and fundraisers. Per New York Road Runner guidelines for participating charities, charity runners in this race must raise at least $1,000.00.

For more information on the RUN FOR AUTISM-New York, please go to www.researchautism.org or email lmatusiak@researchautism.org.

Wilson Chua Runs and Raises Money For His Son and The Autism Community
“The Least I Can Do”

“Wallace may not ever understand what I am trying to do for him. That is who he is and part of his autism,” remarks Wilson Chua. Wallace is Wilson Chua’s 13-year-old son. Diagnosed at age three, Wallace has become Wilson Chua’s inspiration to support autism-related causes.

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Wilson Chua is inspired to run for autism by his son,Wallace, 13.

And support them he has! Since he first began running and fundraising for OAR three years ago, Chua has raised just over $11,000 through his participation in the 2007, 2008, and 2009 Marine Corps Marathons.

Chua, a senior project manager with TMA Resources in Tyson’s Corner, VA, first found out about OAR in 2006. His success raising money for autism research lies not only in his devotion to the cause but in his consistent effort.

He notes that he starts his fundraising early and communicates often with his supporters as well as with potential supporters he adds to the list. In July of each year, he sends thank you e-mails to the group that contributed in the past. From then on, he explains, he stays in touch. “I follow up with monthly e-mails letting people know how much money I’ve raised so far and how my training is going.”

He tracks his contributors using an Excel list so he knows who responded and how much they have given in each year. “I have about 175 people on the list right now, and more than 125 of them have contributed at least once in the last three years.” During the summer, he also reaches out to people who aren’t on the list by using Facebook, LinkedIn, and other social media. His outreach extends to his clients too.

As he maintains virtual contact with potential contributors, Chua also uses old-fashioned techniques like sponsorship. He sent e-mails to every department manager and asked them to forward the e-mail to their employees, and he also posted a flyer in the company kitchen and in other places. In addition, he says, “My company participates in a basketball tournament every year. I provide the Gatorade and water for the last game of the tournament.” Because he does that, he can ask the tournament winner as well as the losing teams to donate money toward his RUN FOR AUTISM fundraising.

He also makes a point to wear his RUN FOR AUTISM t-shirt during practice runs with his Loudon Roadrunners running club to raise awareness among other runners. The club also helped him out by posting his message on its Web site.

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SALUTE: Better Than Hitting a Home Run: Joe Valenzano Loves What He Does and the Help It Brings

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Joe Valenzano bought Exceptional Parent in 1993 and has ensured that it sticks to its mission to develop, translate, and share information as tools for positive change for the special needs community.

It’s better than hitting a home run or scoring a touchdown, says Joe Valenzano, a former professional baseball player now president and CEO of Exceptional Parent, talking about the job he does publishing information in many forms for parents of children with disabilities and professionals working in the field. Not only has he helped thousands through his company, his work has also enabled him to provide help to families and individuals in need.

“I received a call from a long-time friend, a Navy physician based at Portsmouth Naval Hospital telling me about a Chief Petty Officer whose three children were diagnosed with a fatal genetic disorder. They wanted to take the children to Disney World but needed a new van with automated lifts. I made a telephone call to a long–time advertising client in Exceptional Parent. That company donated a brand-new van from the manufacturer so he could take the kids to Disney World. It doesn’t get better than that.” Stories like these tumble from Valenzano as he tells you about what he does, a running undercurrent of satisfaction that his work enables him to help those who cannot help themselves.

An Epiphany
Valenzano spent most of his career in the publishing and communications business, working for years for McGraw Hill and Thompson Publishing, two giants of publishing. “After I had been with Thompson for a while as the executive vice president of finance, a new CEO came in and wanted to bring in his own financial guy. He offered me a job in the financial services sector but I wanted to stay in medical publishing. We parted on friendly terms, and I was thinking about taking a job teaching at New York University.”

Until a friend who was an investment banker asked him to take a look at a fledgling publishing company that was struggling to survive. Then based in Massachusetts, the company was publishing a magazine that went out six times a year to families who had children with special needs. “I went with him to look at it and that’s when I had an epiphany. No one was doing this kind of thing. I thought that if we could assemble the right team of people, we could build it into a multimedia communications company for both families and professionals.”

Valenzano had found his next job. Using his own money and investments from his friends, family, and business associates over the years, he bought Exceptional Parent in 1993. Its mission has not changed since then: To develop, translate, and share information as tools for positive change for the special needs community.

Today, the company, now based in Johnstown, PA, offers information in a number of channels, from the now monthly magazine to interactive online programs; seminars and conferences; an international exhibit and conference; books, DVDs, and CDs; and specialized clinical publications. Valenzano delights in being able to bring needed information to his audience, and his company is often among the first to break news. “We did a 16-part editorial series on autism spectrum disorders in 2002 long before autism was covered everywhere. We zeroed in on breaking down myths and realities, what the science tells us, early identification of warning signs, and much more. It’s very gratifying to be able to do that. And we are able to do it largely because of the relationships we have built in the disability community over the four decades we have been publishing.”

The Most Valuable Sources
The bottom-line principle for the company, notes Valenzano, is illustrated by a poster from a turn-of-the-century issue of The Lancet that hangs in his office. “It’s a picture of a woman holding her infant son. Off to the side, a physician stands with his stethoscope. The headline reads ‘An observant parent’s evidence may be ultimately disproved but should never be ignored.’ We believe that parents are the most valuable sources for their children with disabilities throughout their children’s lives, from infancy to adulthood.”

“We use information to create change in all the work we do,” he explains. To do that, he hires professionals at the tops of their fields who can write with credibility. “What sets us apart from other publishing companies is that we have been endorsed by a professional medical society, the American Academy of Developmental Medicine and Dentistry. Exceptional Parent is considered a peer-reviewed journal offering Category I CME credit for physicians inside its monthly pages. Readers know they can trust what we say.”

Valenzano is particularly proud of the work his company has done on behalf of military families who have children with special needs. “No one else in America devotes the kind of effort and focus we do to military life and the challenges those families face in raising children with disabilities or in caring for loved ones returning from theatre with brain blast injuries, limb loss, anxiety, depression, and post-traumatic stress disorder.”

He is looking forward to 2010 for the new offerings Exceptional Parent will bring to its audience. “We are excited by the digital version of the magazine and that will get better and bigger in 2010. And we’ll also continue to build our online educational programs and our international congress.”

He’s also looking forward to the release of “Extraordinary Measures,” a movie produced by Harrison Ford and starring Ford, Brendan Fraser, and Keri Russell. It’s the story of John Crowley and his search for a cure for Pompe disease, a degenerative muscular disorder two of his three children were diagnosed with. “We published the first major feature on John and his family in 1999 and now it’s a movie,” notes Valenzano who will be attending the premier.

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