The OARacle
	The Monthly E-Newsletter of the Organization for Autism Research "Research and Resources That Help Families Today!" www.researchautism.org

July 2003

Message from OAR President Jim Sack

Jim Sack

Last month, OAR reached the one-and-a-half year mark then finished its first full fiscal year. While the annual audit is just beginning, it’s clear to the members of the Board of Directors and me, that even at this early stage, OAR is meeting or exceeding our expectations in every key objective. You’ve read about the various accomplishments and milestones in previous issues of The OARacle, so I won’t list them again here. What we’ve accomplished and put in place to date is simply the foundation for what we plan to achieve in the months and years to come. I’d like to take this opportunity to share my vision for OAR.

What brought OAR’s founding group together was the convergence of reality, acceptance, and realization. The reality is that my son, James (15), and daughter, Dana (17), have autism for the rest of their lives, just as the children, relatives and adult offspring of the other members of OAR’s Board of Directors and hundreds of thousands of other parents. My wife Susan and I accept that. Don’t read that as our throwing in the towel or writing off James’ and Dana’s futures. Nothing could be further from the truth. Our acceptance of the permanency of our children’s autism has taken us beyond hand wringing and emotion to the powerful realization that there was much that we could do to help our children reach their maximum potential and prepare them for the future. OAR is the embodiment of that realization. As the words from our website suggest, our mission, purpose, and goals can be described in three words - Research… Discover… Inform.

Research by its very nature is a deliberate process. This instantly puts it at odds with parents and families of children affected by debilitating diseases or disorders like autism for which science has no immediate explanation. Researchers will err on the side of caution, taking more time to ensure their investigative process is logical, without flaw, and necessarily redundant and repetitive. Parents of children with autism and other serious medical/health issues cannot afford to wait. For them, each day without constructive treatment is a one they can’t afford to lose for their child.

How does one balance the need for sound scientific practice and methodology with the practical needs of the affected community? Answering this question and achieving an effective balance is at the heart of OAR’s mission and vision. As the article on our current research competition describes, we place our emphasis on studies that demonstrate a high quality of research design and offer to produce outcomes of strong, practical value. Our goal is to fund four new studies this year. My vision is that OAR will be funding 15 to 25 studies per year in three years time.

As we approach that level of research funding, we will begin to explore other practical options to apply the findings and outcomes of these and other related studies. This could lead OAR to fund and create a school for children with autism, a group home, or a job training program as prototypes or model programs for replication elsewhere.

"Fun" isn’t a word commonly associated with autism. But for the growing OAR team and me, it is both exciting and fun to think in the terms I have just described. It’s not going to be easy to get from where we are today to the place I envision for OAR, but “easy” is another word uncommon to autism. We are committed to the effort, and if the first year and one-half is an accurate gauge, OAR will successfully fulfill its vision.

These are my ideas and my vision for what OAR might do in the future. When the Board of Directors meets in October during the weekend of our first Applied Autism Research and Intervention conference and the RUN FOR AUTISM, defining our strategic objectives and refining our vision will be at the top of the agenda. At the same time, OAR’s emphasis on the practical - research and resources that help families today - will serve as the guiding compass point keeping us on track with our objectives always in sight.

In closing, I thank all those who have helped OAR get established and believed in what we are trying to do. While we are pleased with our progress during our first year and one-half, we are by no means finished or content. There is far too much left to do.

News

OAR Enters Regional CFC Campaign

OAR is pleased to announce its inclusion in the Combined Federal Campaigns (CFC) of the National Capital Area, as well as selected campaigns in Maryland and Virginia.

This fall, federal employees, postal workers and members of the U.S. military service in D.C., central Maryland including St. Mary’s County, and parts of Virginia (the central region, Quantico, South Hampton Roads and the Virginia Peninsula) can make contributions directly to OAR’s research studies and programs. Next year, OAR plans to be listed in every CFC campaign across the United States and abroad.

The CFC is the federal government’s annual charitable campaign. It was established by the United States government in 1961 as a way for federal workers to support charities of their choice with a single contribution one time a year. To qualify for the campaign, charities like OAR must meet a set of requirements regarding their mission, tax-exempt status, finances, and governance.

Last year, federal employees and America’s military families donated nearly $237 million to charities through the CFC. The National Capital Area campaign raised over $47 million, making it the highest performing campaign in the country.

OAR President Jim Sack said, "Being accepted as a worthy charity in the National Capital Area CFC and some of the campaigns in Maryland and Virginia is a significant step for OAR. It is a notable achievement to qualify. The CFC not only offers us the chance to raise additional revenues for our research and information programs, it will also raise awareness of autism and OAR in the federal workforce and the armed forces. Ultimately, participation in the campaign will help extend the benefits of our programs to the men, women and families who serve our country in various capacities.”

The fall campaign begins Oct. 1. If you participate in the CFC or know people in Washington, DC, Maryland, or Virginia who are eligible to contribute, please help us spread the word about autism, the continuing need for autism research, and OAR. Thank you for making our first CFC campaign a success!

OAR Research Study Stimulates Massachusetts Pilot Program

Nicholas Costa

Earlier this year, when José Costa, the father of a 8-year old son with autism, heard about OAR’s research grant to Dr. Robert Stromer at the Shriver Center, University of Massachusetts Medical School, he immediately contacted OAR to provide an unsolicited testimonial. The call resulted in a pilot program dubbed the Milford Project.

Last fall, Costa’s son, Nicholas, participated in Dr. Stromer’s computerized educational program, an innovative teaching approach that blends computer technologies, notebook activity schedules and picture-based communications skills in a way to enhance social communications. Nicholas was originally taught the method by a teacher who formerly worked with Dr. Stromer. In Nicholas’s case, the program produced positive changes within two weeks, according to his father. “When we saw the results, we were amazed and we wanted to learn how to do the program ourselves and extend it to more children and families,” Costa said.

After seeing more success with other children, Costa and other parents of children with developmental disabilities in Milford, Mass., began organizing an initiative to make this educational program available to more than a dozen of the town’s preschool and elementary school children with autism, including Nicholas. In that vein, they began to raise money and look for a way to more formally organize the project. With OAR embracing the project and providing the charitable umbrella, Costa’s plan began to unfold.

His neighbor, Bill Sanborn, who was preparing to run the Boston Marathon, had asked Costa if there was anything he could do to raise money to help Nicholas. After considering a list of options, Costa asked Sanborn to dedicate his run to raising the funds needed to introduce this educational package in the Milford schools.

At the Boston Marathon in April, Sanborn raised over $3,000, funds that will be used for the training of six to eight teachers by Stromer. Since then, a local bank has agreed to donate an additional $6,000 to purchase the necessary equipment including computers and cameras.

Costa and his fellow parents are looking forward to having the new educational program launched at the preschool and elementary school this fall. “It has endless learning possibilities,” he said. “It allows kids with autism and PDD to learn through pictures books, which are computerized. When the computer shows them an activity, it’s more effective than the teacher telling them.”

If successful with the preschoolers and elementary school children this coming school year, Costa, who is also a school board member, sees potential for the school district to expand the program in the future by paying for additional equipment. “Based on my experience with Nicholas, I see programs like this leading to broader applications where students will be able to do the program all the time using a laptop.”

2003 Research Competition Moves to Final Phase

OAR’s second annual Applied Research Competition is already promising to be more competitive than the inaugural competition last year. “We had more researchers apply,” said Peter Gerhardt, Scientific Council Chairman. “And with a two-phased review process, we have effectively raised the bar. By narrowing the field through the preliminary review, we can really concentrate on proposals selected for the final review when they arrive in September. There are some excellent research topics.”

Researchers nationally and internationally based sent 26 pre-proposals, an abbreviated proposal format, in response to the Request for Proposals published in March. Based on the scoring and review of those submissions by a panel made up of five members of the Scientific Council, OAR today invited 15 researchers to develop their research concept into full proposals. “Each proposal had some merit,” Gerhardt continued. “Ultimately, two factors made the difference - the quality of the research design and the practical nature of the anticipated outcomes. Will the proposed study accomplish what it intends to do? And, will the outcomes have practical meaning for those living with autism today.”

Because the competition is still in progress, Gerhardt chose not to identify the researchers or the specific titles of their studies. “The studies we will consider will cover the lifespan and in some cases will extend to the dynamics of families and socialization with typical peers. A few propose to shed new light on social skills development, joint attention and imitation, while others examine factors for successful interventions like Applied Behavior Analysis. Two proposals examine aspects of behavior, one focuses on assessing problem behavior while the other will explore treating stereotyped behaviors,” he explained. “Finally, we are pleased to have some studies that propose to examine adult issues related to employment and others that will examine issues germane to persons with Asperger Syndrome and high functioning autism.”

The final proposals are due Sept. 15. OAR’s Scientific Council will conduct the final review and make recommendations to the Board of Directors by the end of November. The Board plans to select up to four studies ($120,000 in grants) for funding beginning Jan. 1, 2004.

Special Section: RUN FOR AUTISM Build Your Own Fundraising Website The Internet can be used to do just about anything today. So why not harness the power of the Web to raise money for autism research? OAR’s runners, friends and volunteers for the upcoming RUN FOR AUTISM and other events are finding out just how easy that is thanks to the OAR’s partnership with justgiving.com. On justgiving.com’s website, any OAR supporter can create a personal fundraising Webpage to collect pledges from family and friends online. Instead of sending “snail mail” letters and collecting cash or checks, justgiving.com allow supporters to donate securely and tax-efficiently by credit or debit card. Funds are sent directly to the OAR’s bank account, saving everyone the time and energy involved in collecting pledges and providing immediate benefits. The pages can be created for the RUN FOR AUTISM, sporting events or special occasions. Even non-techies can create their own web pages on the justgiving.com website. And, justgiving’s support team is responsive to anyone who encounters any difficulty. The set up program uses simple templates that can be personalized and updated. Once the Webpage is created, the designer can e-mail potential donors, track donations, and monitor their progress on-line. To date, OAR Runners for Autism have created 20 pages and raised more than $6,000, half of which is from online donations. To view one of our runner’s pages, please visit this link. To get your own website started, please contact Mike Maloney, OAR’s Executive Director, by e-mail or visit OAR’s justgiving.com site. We look forward to hearing about your success! Green Bay Toasts to Autism Research Parents and autism supporters from the greater Green Bay, Wisc. area raised their wine glasses to raise funds in a kick off event for the RUN FOR AUTISM last month. The first annual wine tasting and raffle by the Autism Society of Northeast Wisconsin (ASNEW) brought in almost $2,000, said Chapter Secretary Megan Mills-Koehler. The chapter signed on as OAR’s first Midwestern Partner in the RUN FOR AUTISM in April, becoming the first parent-led organization to successfully recruit a marathoner from outside their organization to join the RUN FOR AUTISM. Proceeds from the event will help the chapter and its Runner for Autism Jeff Poppele reach their fundraising goal of $5,000. Half of the funds raised will support a new OAR research study beginning January 1, 2004. The remainder will be used to support ASNEW’s local programs. Brothers Dedicate Marathon Run to Autism The Quattrone Family (from left) brother Jason, Wayne and James with their mother, Patricia Individuals from all walks of life are coming forward to support the RUN FOR AUTISM. Among those who have taken up the cause on their own are Wayne and Jim Quattrone, two brothers from Jamestown, NY. The notion of service comes easily to these men. Wayne, the older of the two, is a 23-year veteran of the U.S. Air Force still on active duty as a Chief Master Sergeant. Jim has served his community in law enforcement for 16 years and is presently the deputy sheriff in Jamestown. A runner of three previous marathons, Wayne came up with the idea to run the Marine Corps Marathon this year. Jim agreed and together they decided to make their run count for more than brotherly competition or personal accomplishment. After registering for the Marine Corps Marathon, they began searching for a cause where they would be able to make a direct impact on children and help a charity. That’s when they found OAR on the Marine Corps Marathon website. Thirty-seven year-old Jim, remembering the sister of a person he worked with in college, suggested autism. “I had a little exposure to it in the past and I’m learning more about autism now,” said Jim. “Since I volunteered for the RUN FOR AUTISM and began talking about it, I’ve learned about more people affected by autism.” Wayne, who is 40, has had the same experience. “I’ve found out about some people in my squadron who have children with autism,” he said. “I didn’t know that before I began the effort for the RUN FOR AUTISM.” Close to 70 members of the 300-person squadron in Little Rock, Ark. have been helping him raise $2,500 for his cause. Some of his co-workers have been volunteering at concerts held at the local ALLTELL Arena, which will deliver Quattrone a check after the events. Others are helping by holding weekend car washes. Their supporting efforts have helped Wayne free up his time for training, which will become more difficult in September when he transfers to Hawaii. His new position will require a lot of traveling right away, leaving little time for running. Nevertheless Wayne is confident though that he’ll be able to build up a solid running base of 22 miles before shipping out. Jim is also facing challenges with his schedule. Working the 3-11 p.m. shift at police headquarters and taking care of two small children at home, he fits in his training runs early in the morning. Though he has been running for over 15 years, he is a first-time marathoner. The younger brother has set a goal to raise $3,000 total and has already received $500 in pledges. He has also set an additional goal of finishing the marathon in 3 hours and 50 minutes to receive additional pledges. “I don’t know how excited I am about the running part,” Jim said, “but what’s really been neat is getting out there and doing the fundraising. It’s more of an incentive to train.” This is not the first time the Quattrone brothers have prepared to run a marathon together. Almost two years ago, the two men were going to run together in the Air Force Marathon, which was cancelled because of the events of September 11. Wayne thinks that he and Jim may well run more events in the name of autism. “I can see this as being long-term,” he said. “I hope it’ll be an annual thing.“

Resource

Transition Planning Key to Job Readiness

Peter Gerhardt, Ed.D.

Note to readers: In each issue of The OARacle, we provide a helpful resource on a topic of interest within the autism community. This month's article focuses on how to plan for your child’s transition to employment. Special thanks to OAR Scientific Council Chairman Peter Gerhardt for his contribution.

As adults, many of us define ourselves by what we do for a living. Not only do we identify ourselves by our career, we often define others by their occupations.

For individuals with developmental disabilities including autism, gainful employment is a regrettably uncommon outcome. According to a recent poll conducted by Lewis Harris and Associates (2002):

• Up to 75 percent of all people with disabilities are unemployed;
• 79 percent of all people with disabilities who are unemployed wish to be employed;
• Approximately 50 percent of working age people with disabilities who are unemployed believe employers are not sensitive to the needs of workers with disabilities.

While the statistics represent a diverse mix of people with varying disabilities, the results may unfortunately be somewhat optimistic with regards to the level of employment for individuals with autism. The significant social, communicative, behavioral and learning challenges associated with autism spectrum disorders (ASD) present individuals, their families, employers and support personnel with a number of complex challenges.

But the challenges should not be seen as insurmountable. With planning and preparation, these challenges can be viewed as opportunities for continued growth as your child with autism prepares for adulthood. Here are a few recommendations for families and professionals in planning their child’s transition:

Redefine Work Readiness
The term “work readiness” has generally been used to define a cohort of skills that an individual was required to demonstrate before he or she could be considered a candidate for community employment. These might include extended time on task, the absence of challenging behavior, some degree of social competence, conversational skills, etc. Unfortunately, this arbitrary standard of competence has results in a situation where only the most able individuals were deemed employable and inadvertently excluded far more people with ASD from the workforce than it has helped gain access. Given that many of the skills one needs to be employed are only learned while on the job, it puts individuals with ASD in a “Catch 22”-situation. This concept needs to be redefined.

Work readiness should be viewed as a process of ongoing job development for all individuals, independent of current skill or ability levels. Once that is acknowledged, more appropriate and functional transition programming (i.e., community experience, job sampling, social coaching, transportation training, self management, etc.) can be implemented for all learners, not just for those whose learning curve may be shorter or behavioral challenges fewer.

Create an ITP
Federal education law requires the provision of school-to-work transition planning be developed and implemented for individuals with disabilities in the form of an individualized transition plan (ITP) beginning at the age of 14. The most critical question to be answered in any transition plan is simple - “Transition to what?” The answer to this question will help determine the end product (e.g., a minimum of 20 hours of employment in a desired and employable industry) and subsequently guide input and decision-making related to the content and process of the employment component of the ITP.

Transition planning meetings should involve the individual with ASD, the parents, and relevant educational and related support staff (including speech and language pathologists). One outcome of this meeting is the development of a transition goal that takes into account likes, dislikes, preferences, strengths and challenges of the individual with ASD. Further, intermediate objectives are identified and responsibilities assigned.

In this way a goal is set, discrete objectives are developed, progress is assessed and, based upon that assessment, modifications can be made as necessary (as they almost always are) at regularly scheduled follow up meetings. Without such a plan, future employment, while possible, becomes an increasingly distant goal. As the saying goes, “If you don’t know where you are going, any road will get you there.” All the more reason to plan, implement the plan, and then revisit and modify as necessary.

Seek Developmental Jobs
In obtaining a first job, it is helpful to remember the concept of developmental jobs. The term developmental job refers to the concept that for very few of us, our first job is rarely our dream job. Instead, these jobs are opportunities to learn how to have a job and meet specific needs of an individual’s life. They are important because they are the place where the person with ASD can begin to, 1) develop the skills necessary to keep and hold a job, and 2) develop a sense of which type of jobs and job conditions are best for him or her.

For any job though, there are some minimal requirements that should be expected. Employers need to provide a clean and safe working environment. There should be an opportunity for pay increases as a function of increasing levels of competence. Full-time employees should get benefits such as paid sick and vacation time at the minimum or at the maximum, receive the same health benefits given to their co-workers without disabilities. Last but not least, there should be opportunity for advancement.

Make the Right Job Match
Perhaps the most critical issue in job development is an appropriate “job match,” the meeting of individual preferences and job characteristics in the workplace. A high degree of job match means that the production, social, and environmental components of a job are viewed as favorable by the employee. A low degree indicates an unfavorable view of these conditions. For many learners with ASD for whom pay may not be a primary motivating factor, the degree of job match can be the critical variable in mutual employee and employer satisfaction. If not met well, it will likely lead to unemployment.

Carve Out a New Job
Today’s job market is both highly technical and generally complex with most employees required to multitask. This can play to the advantage of persons with ASD through “job carving,” an innovative approach that takes advantage of this multifaceted environment by working to create a position where none previously existed. This is a route that requires the interest and negotiating skills of a parent, sibling, or friend who knows the individual’s personality, strengths and weaknesses as well as his or her work interests. A family member of friend might be able to create a job opportunity in their own workplace or in a job setting targeted in the transition plan. If so, the objective is to present it to the employer for its economic benefit to the company as well as a strong job match for the individual with ASD.

Consider Co-Worker Training
After securing employment for the individual with ASD, parents and other support persons may have to help educate the individual’s co-workers on ASD and what it means in the life of their new colleague. For the most part, unless they have direct experience in supporting a person with ASD, most potential employers and co-workers will have limited understanding of ASD. For example, providing employers and specific co-workers with insight into how best of offer directions or feedback to their new colleague, letting them know that if they ask a question they may need to wait a few seconds for the reply while the question is being processed, or assuring them that despite a lack of eye contact, he or she is still paying attention, can be invaluable in preventing misunderstanding, miscommunication and, ultimately, the return to unemployment.

Summary
For many individuals with ASD and their families, the transition from school to work is a stressful time filled with new challenges, people, agencies, environments and decisions. With early, comprehensive planning, the transition to work can also be a period of growth, filled with new and positive support experiences and the development of an increasingly positive, individually determined quality of life.

Despite the currently unfavorable employment statistics, many individuals with ASD are employable and very capable of being competent, dedicated employees with the right planning, training, and support. What is needed now is greater attention to more clearly identifying, through the support of applied research and the dissemination of best practices, those educational, behavioral, social, and systemic interventions and supports that will best allow individuals with ASD to achieve this highly valued goal.

Events

Capital Autism Golf Classic 2003
The Piedmont Club, Haymarket, VA
Monday, September 22nd, 2003

Mark your calendars for the second annual Capital Autism Golf Classic! Participants will get to tee off at the one of the best-conditioned courses in Northern Virginia. The Piedmont Club is located in the heart of Virginia’s Civil War country and was created by famed golf designer Tom Fazio, known for designing golf courses with generous fairways and medium-sized subtle greens. Please join us for this all-day event where you’ll play a challenging course, compete for team and individual prizes and support a worthy cause. Proceeds from the event will support research and information programs that will provide practical answers to individuals with autism and their families.

For more information or to purchase tickets, please contact Mike Maloney by e-mail or phone, (703) 351-5031.

Applied Autism Research and Intervention Conference
Key Bridge Marriott, Arlington, Va.
Fri., Oct. 24 and Sat., Oct. 25, 2003

Parents and professionals are invited to attend OAR's first Applied Autism Research and Intervention Conference. The two-day event will be part of a three-day schedule of autism events leading up to the "grande finale" - the RUN FOR AUTISM on Sun., Oct. 26 in the Nation's Capital.

The conference's theme, "Education and Intervention Across the Life Span" represents the host of topics that will be discussed during the conference. During the first day, attendees will see presentations by members of OAR's Scientific Council and guest speakers. The conference will conclude on the second day with half-day workshops. A list of speakers so far includes OAR Scientific Council Chairman Peter Gerhardt, Ed.D. and fellow Council members Michael Powers, Psy.D., Michael Fabrizio, MA, BCBA, Suzanne Letso, MA, BCBA, James Mulick, Ph.D., Joanne Gerenser, MA, CCC-SLP, Robert Sprague, Ph.D. and Brenda Myles, Ph.D. Edward G. Carr, Ph.D., a well-known speaker on problem behaviors will also present.

For more information, contact us by e-mail.

Other Voices 7
Carolines on Broadway, New York City
Monday, Nov. 10, 6:00 - 9:00 p.m.

You are invited to a evening of comedy and cabaret in the Big Apple benefiting autism research and a New York City women’s theatrical organization. Marking its seventh year on stage, Other Voices VI makes it possible to hear the voices of those not presently heard - rising talent in the performing arts and those diagnosed with autism who cannot speak. Last year’s event raised $50,000, the highest total ever. Please help us break another record this year.

The show will be held once again at the famed club, Carolines on Broadway, and will feature the talents of Tony award-winning actress and singer Melba Moore. The event includes a cocktail reception, followed by dinner and the show. For information on tickets and sponsorships, contact Mike Maloney by e-mail or by phone: (703) 351-5031.

Please feel free to pass this e-newsletter along to a friend.

Funds raised go directly to the identification of research priorities and the funding of applied research grants that will help individuals and families TODAY. Please consider making an online donation through our secure server on our website. Or if you prefer, please send us your donation to the address below. Donations are fully tax-deductible. Thank you for your support!

OAR is a nonprofit organization established in accordance with section 501 (c)(3) of the IRS Code and is incorporated in the Commonwealth of Virginia (EIN#54-2062167). As provided for under the laws of the Commonwealth of Virginia, a copy of OAR's financial statement isavailable upon request form the State Division of Consumer Affairs in the Department of Agriculture and Consumer Services in Richmond, VA.

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Organization for Autism Research
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Arlington, VA 22201
(703) 351-5031

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