Message From the President

Peter Gerhardt, Ed.D. President

Adults on the Spectrum: What Does The Future Hold?

In the year 2008, we have a broader, more sophisticated, more research-based understanding of the needs of learners with an autism spectrum disorder (ASD) than at any time since Kanner’s 1943 description of 11 children with “autistic disturbances of affective contact” (1943). Unfortunately, much of what we know focuses on the educational and behavioral needs of younger children on the spectrum and their families and little on the needs of adolescent or adult learners. Reasons for this disquieting disparity are diverse but they include (although are not limited to):

• Limited professional interest in the provision of quality and effective adult services and supports
• A lack of societal awareness as to the potential of adults with ASD to be employed, contributing, and active members of their communities when the appropriate interventions and supports are provided
• An absence of a comprehensive federal policy in support of adults on the spectrum, resulting in a tangle of state-by-state programs and policies, which are often underfunded, confusing, and supportive of outdated or inappropriate models of service delivery.

If that’s the case then one might argue that the future for adults with ASD is, at best, uncertain and, at worst, nonexistent. However, I don’t believe that to be the case. Like the future presented to Ebenezer Scrooge by the grim faced ghost-of-Christmas-yet-to-be, the future for adults on the spectrum is ours, as a community, to change for the better. But, as with Scrooge, our time is short. If we are to change that future, the time to act is now.

Limited Professional Interest

A colleague of mine once said, “The problem is nobody goes to college to work with adults.” While generally true, this is also a shame as, for most of us, the best years of our lives are those spent as adults. But given the challenge of limited professional interest, the myriad opportunities of adulthood are routinely denied to adults on the spectrum. One reason for this lack of professional interest may be the continued misperception that adults on the spectrum have somehow “maxed-out” in terms of skill development and learning potential. My experience has consistently been to the contrary. Further, I have often found that the perception of having maxed-out presents a far greater barrier to new learning than does any real or hypothesized neurological limit on potential. So any limit on one’s ability to learn, it seems, lies less with the individual and more with our inability or unwillingness to view adults on the spectrum as lifelong and active learners.

This needs to change if we are to alter our Dickensian vision of the future. As a community, we need to focus on ways to attract energetic, knowledgeable, and dedicated professionals to work with adolescents and adults on the spectrum. Subsequently, we need to ensure that these individuals demonstrate the professional competencies to teach, not outside the box, but rather outside the classroom in the places where their students and adult clients will actually live, work, and recreate. Subsequently, these professionals need to redefine adulthood as more than just the sum of simple job skills (e.g. packaging, assembly, or even data entry) to include such complex concepts as interdependence, social inclusiveness, safety, sexuality, and meaningful life choices. Once we begin to do that the future may begin to look just a bit more positive.

Societal Awareness

Despite the highest level of autism awareness than at any other time in our history, society at large does not see adults on the spectrum, no matter where they fall, as employable and participating members of their communities. And why should they?  The vast majority of our autism awareness efforts today tend to focus solely on the deficits (which are very real) and challenges (which are both complex and extensive) of autism. While accurate, the deficits and challenges represent only part of the story and, absent the part about employability, what is society at large left to think but that adults with autism are unemployable and, for lack of a better term, “unreachable”?

This too needs to change if the future that adults on the spectrum deserve is to be within their grasp. Simply put, what we need to do is educate, educate, educate with the intent of changing attitudes and understanding. This, it should be noted, is not an insurmountable task. Since the signing of the Americans with Disabilities Act (ADA) in 1990, there has been a growing awareness of the needs of individuals with physical disabilities along with an increased understanding of each individual’s potential if provided with reasonable accommodations. We now expect to see curb cuts, wheelchair ramps, handicapped parking spaces, and hand rails in bathroom stalls. Our new awareness message needs to be that, while autism is indeed challenging, people with autism, despite the challenges, can be your employees, co-workers, neighbors and even friends, provided they are given an effective education and when necessary, the occasional neurological curb cut.

No Comprehensive Federal Policy

A major challenge that families and their adult children face is that there is no federal guarantee of services (appropriate or not) after graduation from secondary school or equivalent educational programming. At least for the foreseeable future, that seems unlikely to change. That, then, presents us with a bit of problem if we hope to construct a positive future for adults with autism: Where is the money coming from?  But like nearly all problems, there is a possible solution and in this case, the solution is persistent advocacy.

Mahatma Gandhi is quoted as saying, “You must be the change you wish to see in the world” and that is where persistent advocacy starts, with a vision for the future. Visions alone, however, don’t change much of anything. In reality, it takes a tremendous amount of hard work to construct a firm foundation for the future of adults on the spectrum. If, as the saying goes, it takes a village to raise a child, then it should take a minimum of two villages to raise a child on the spectrum.

Unfortunately, the villagers won’t be coming to us with offers of assistance so we, as individuals and as a community, have to go to them. Starting with the people in our neighborhoods, in your son’s or daughter’s school, at the local businesses we patronize, in service organizations and communities of faith to which we belong, town and/or county officials and, ultimately, representatives of state and federal governments, we need to educate everyone around us about the possibilities for the future and how they can help turn this vision into a reality. Bright futures don’t just happen; they require planning and an awful lot of hard work and there still is no guarantee. But, in the absence of a comprehensive federal policy on supporting adults on the spectrum, it seems we have little other option.

A Future We Can Attain

I do think the future for adults on the spectrum, wherever they fall on the spectrum, is no more or no less than what we will make it be. But given the strength of the many family members out there, the talent and dedication of the professionals in the field, and the willingness of informed community members to provide real opportunities and concrete support, I am pretty optimistic. Maybe it should not have to be this hard but, well, it is. Hard does not mean impossible. While it will take a tremendous amount of work, a positive future for all adults on the spectrum is attainable, and your children and our students and clients deserve nothing less.

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New Assessment Guidebook Receives Support

OAR is pleased to announce the up-and-coming release of the fifth publication in the Life Journey through Autism series: A Parent's Guide to Assessment. OAR is scheduled to begin distribution of the new guide in June thanks in part to a $10,000 grant from the Doug Flutie, Jr. Foundation for Autism and the continuing support of the Southwest Autism Research and Resource Center (SARRC) in Phoenix, Arizona.

The Flutie Foundation, known in part for its commitment to funding education and research into the causes and consequences of childhood autism, has supported several of OAR’s projects in the past. Earlier contributions aided in the inaugural Applied Autism Research and Intervention Conference in 2003 as well as OAR’s first Autism Research Convocation in 2006. With the Foundation’s latest support, OAR will be able to distribute an initial 10,000 copies upon request to individuals in the autism community. This new resource will ensure that readers are aware that assessment is a tool for both parents and professionals.

SARRC joined OAR in publishing the Life Journey through Autism: A Guide for Transition to Adulthood last year and is continuing its collaboration with this new guide.

The formal assessment process can be a daunting experience for parents of children newly diagnosed with autism. By using highly technical language and focusing on “deficit performance,” assessments can often overwhelm and dishearten parents. In addition, outcomes are rarely explained in terms that parents can use to set goals for their children. This new Parent’s Guide to Assessment will serve to provide the tools to better understand the assessment process and, subsequently, utilize assessment outcomes to improve services and interventions for their children.

Among the topics covered in the Assessment guide will be:

• The strengths and weaknesses of the assessment process
• The technical language contained in the reports
• Who is qualified to complete an assessment
• What specific assessment tools measure
• How to interpret the results in a way that informs proactive, individual decision making

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Focus On OAR Research

Improving Executive Function to Improve Flexibility

“Kids with Asperger Syndrome and high-functioning autism (AS/HFA) are bright and imaginative people,” says Laura Anthony, Ph.D., principal investigator on an OAR-funded research project. “They generally are intellectually and academically able to be placed in a mainstream class.” What can trip them up many times are problems with executive function (EF): flexible thinking/behavior, integration, planning, and organizing. “They may have problems with things like functioning in a class with 30 other kids or having to change classes every 40 minutes, keeping up with the group, and understanding when to start the next thing,” Anthony says.

Dr. Anthony came to the Children’s National Medical Center in the Washington, DC area, to work with Lauren Kenworthy, Ph.D., a pediatric neuropsychologist, who had been studying what makes children with AS/HFA unique in terms of executive function. “She and her colleagues uncovered this deficit in children with AS/HFA,” explains Dr. Anthony. “I have a background as an interventionist.” It was the perfect match and the two teamed up to propose the project to OAR.

The researchers are developing an intervention that they hope will help children with AS/HFA improve their flexibility in school. Because there are no tested school-based EF interventions for children with AS/HFA, the project builds on an EF cognitive remediation intervention for children with traumatic brain injury.

Drs. Anthony and Kenworthy partnered with the Ivymount School, a private school that has developed the Model Asperger’s Program for children in 2nd-6th grades. Because the school, which is located in Rockville, MD, does such good work with its students, she says, the project will not only draw on its students and parents for the project, she and Dr. Kenworthy are also drawing on the expertise and experience of school administrators and teachers.

How the Study Works

The project is split into two phases: development and testing. In the development phase, the investigators, working with Ivymount staff and parents, will create an executive function intervention that they eventually hope can be used by teachers, clinicians, parents, and others. At the end of the development phase, they will have created a manual to guide people through the process.

The intervention is aimed at teaching flexibility skills in the classroom through an integrated program of cognitive instruction, guided practice, and strategies for generalization. Incentives for change will also be built into every component of the program. These are the key components of the planned intervention:

Cognitive instruction: The program will teach:

• WHAT flexibility is and the verbal labels for flexibility (Plan A/Plan B, “shifting gears,”) that are used consistently.
• WHY to be flexible. Explicit instruction in why it can be hard to be flexible and the concrete utility of being flexible.
• HOW to be flexible. EF deficits in autism spectrum disorders (ASD) interfere with learning any new skill, and the program will address this by teaching flexibility skills in a highly structured format.

Guided practice with faded cueing with classroom activities designed to require flexibility: This guided practice will begin with concrete tasks and ample teacher support, and as the child builds skills, will move towards teacher cueing and self-reliance on written cues and less direct support. This method will gradually increase the child’s ability to be independent and automatic in using the new skills, since automatic processes are the most efficient.

Incentives for change: These will include motivational supports to make learning new habits appealing (for example, referencing a child’s hero: “Let’s work on your Harry Potter stuff.”); using a collaborative approach in which student and teacher work together to enhance flexibility; a reward system designed by the child; praise; and concrete progress tracking.

Generalization strategies will ensure the children can be flexible in new situations. Generalization is promoted through: using teachers as interventionists; parent training; developing a specific process, and accompanying form, for debriefing spontaneous, school-based opportunities for flexibility; role-playing use of the strategy in new situations; and producing a culminating video with each child in which he or she demonstrates the new flexibility skills.

Currently, the researchers are working with Ivymount to develop the intervention. Dr. Anthony says they are running focus groups with parents, school staff, and children with ASD, and they expect to finish the manual in June. They will pilot the program at Ivymount next year, making adjustments as they go along.

Disseminating the Intervention

They hope to have the data to support a larger grant that will enable them to use the intervention with larger randomized groups that will allow for a control group. “This will enable us to test how easy the intervention is for teachers to pick up and use and whether kids with the intervention do better than the kids without,” says Anthony.

Ultimately, they would like to see the intervention used widely. “We hope that teachers in special education classes could use this intervention to prepare children to participate in a mainstream classes or prepare them for the next phase of their education, high school or college or whatever the next step might be.” Eventually, she goes on to say, guidance counselors or school psychologists might use the program with children in mainstream classes.

Once the project is completed, at the end of 2009, the researchers will have:

• A well-developed draft of a teacher manual, including background resources, lesson plans for the cognitive instruction elements, easy-to-use skill sheets and activities that can be immediately implemented in the classroom, goal-setting and motivational tools, and a system for measuring individual progress.

• A teacher training workshop that provides hands-on instruction in the underlying theory of the importance of EF in AS/HFA, how to integrate EF instruction in the classroom, and the most effective techniques for supporting and coaching new skills.

• New measures (one questionnaire and one observational measure) that gauge the practical improvement in EF skills in real-life situations.

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News from OAR

June to Feature A Summer’s Eve Party for Autism Research and More:

OAR plans to celebrate the arrival of summer and progress in autism research with two events in June. On June 2, OAR will host Other Voices, a comedy-cabaret evening at Carolines on Broadway in New York City. Ten days later, on June 14, OAR will host A Summer’s Eve Party for Autism Research at the Embassy of Finland in Washington, DC, a new event organized by OAR Board member, Pete Skalaban. Each event offers to provide an evening of good food, camaraderie, and fun in a unique setting, all to benefit OAR’s autism research and information programs.

On June 2, OAR returns to Carolines for its annual evening of comedy and song. Long-time partner, Shotgun Productions, will coordinate the entertainment and produce the show, which, as in the past, promises to be dynamic, diverse, and humorous. One-hundred percent of the proceeds will go directly to OAR.

OAR’s newest Board member, Pete Skalaban, set his sights on establishing an OAR event in Washington, DC as soon as he came aboard in January. A Summer’s Eve Party for Autism Research is that event. He describes it as “a night of fine wines, dancing, and fun,” and says, “The Embassy of Finland provides a wonderful setting. It is perfect for this event, elegant without being too formal.”

Skalaban timed the event to coincide with the arrival of summer associates for the many law firms in the nation’s capital and expects the 200 tickets to go fast.

The New York City event will bring laughter; the DC event will have people on their feet dancing. Both events will include food and refreshments throughout the evening. Additionally, the DC event will feature a series of fine wines provided by DC’s own Bell’s Wine Shop—reds and whites from around the world—throughout the evening. Tickets for both events are modestly priced at $175.00 each for Other Voices and just $100.00 each for A Summer’s Eve Party for Autism.

OAR is delighted to announce that Peter (Pete) Skalaban, a partner with Spriggs and Hollingsworth, a litigation firm based in Washington, DC, recently joined its Board of Directors. “Pete brings a great mix of enthusiasm and experience to our board, and we welcome his contribution of time and expertise,” says OAR Executive Director Mike Maloney.

Skalaban’s motivation is his son, Zachary, who was recently diagnosed as being on the autism spectrum. Specifically, he chose OAR because he is “increasingly impressed by the clarity and focus of its mission, the importance of its objectives—including the dissemination of scientifically and medically reliable information to the autism community and the excellence of its leadership.”

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Research Feature: Working with Children with ASD: Tips for Medical Staff

by Brenda Smith Myles, Ph.D. and Jill Hudson, MS, CCLS

A member of OAR’s Scientific Council and the recipient of the 2004 Autism Society of America’s Outstanding Professional Award and the 2006 Princeton Fellowship Award, Brenda Smith Myles, Ph.D., has written numerous articles and books, including Asperger Syndrome and Difficult Moments: Practical Solutions for Tantrums, Rage, and Meltdowns (with Southwick) and Asperger Syndrome and Adolescence: Practical Solutions for School Success (with Adreon). She has made over 500 presentations all over the world, written more than 150 articles and books on autism and Asperger Syndrome, and served as the co-chair of the National ASD Teacher Standards Committee.

Jill Hudson, MS, CCLS, is a certified child life specialist. Trained at Johns Hopkins, she formerly worked at the Children's Hospital of Philadelphia. She is the author of several books on autism spectrum disorders, including Prescriptions for Success: Supporting Children with Autism Spectrum Disorders in the Medical Environment. She currently works at the Ohio Center for Autism and Low Incidence and presents and consults internationally.

Going to the doctor’s or dentist’s office or the hospital is anxiety-producing for most people, but especially so for children. Not only is the child sick or injured and needs care, but she is in a new setting and everything around her is unfamiliar. The sights, sounds, and smells are new. The routine is different. New people come and go, and the child quickly becomes the victim of fast-paced decisions that are often made without considering the child’s level of understanding. As a result, even an otherwise well-adjusted child can get anxious.

Now imagine that an individual with an autism spectrum disorder (ASD) enters the hospital environment. New people, sounds, smells, and expectations affect the child or adolescent, in ways similar to their neurotypical peers. In addition, the child with ASD usually has higher levels of anxiety and generally reacts negatively to novel situations. The result is a highly stressed, anxious child who may soon become unable to cope in this confusing environment by become hyperactive; acting nervous or silly; withdrawing; or having a tantrum, rage, or meltdown.

This situation is exacerbated by interactions with medical personnel who are not trained specifically to work with individuals with ASD. Medical personnel, without understanding the unique characteristics of those with ASD and how they perceive the environment, often unintentionally increase the child’s anxiety and promote behavior problems. The purpose of this brief article is to provide an overview of some easy-to-use strategies that medical personnel can use to minimize the trauma associated with medical care for children and youth with ASD.

Four Easy Steps

Individuals with ASD present with myriad challenges across domains ranging from social to sensory to visual learning. As shown in Table 1, these characteristics revolve around not understanding the environment, experiencing the environment in an unfriendly manner, and not understanding how and when to react. Thus, interventions that can address these challenges are essential. Interventions that can make medical visits easier for individuals with ASD include priming, predicting, wrap-up, and countdown (Sakai, 2005).

Priming

Priming is a method of preparing the individual for an activity that she will be expected to complete. Priming accommodates a preference for predictability and promotes more consistent responding. With the emphasis placed on previewing activities before they will occur, the child is often less likely to experience anxiety and stress about what lies ahead. With anxiety and stress at a minimum, the child can focus her efforts on successfully completing activities. Because the individual with ASD is a visual learner, a picture schedule of activities (see Figure 1) or a narrative that describes the activities can be very helpful. Often narratives describing an event can be presented as a brief story with digital photos or simple drawings showing equipment or procedures. Another priming activity would include allowing the child or adolescent to take along a favored item. In this way, the individual with ASD is more prepared for the new environment because the favored item makes the setting more familiar.

Figure 1. Picture schedule of activities From: Hudson, J. (2005). Prescription for Success: Supporting Children with Autism Spectrum Disorders in the Medical Environment (p. 19). Shawnee Mission, KS: Autism Asperger Publishing Company.

Predicting

Figure 2. Change symbol

When a child or adolescent is primed for an event, she expects it to happen in just that way. Often schedules or procedures change, so it is important that predicting be a part of the routine. Predicting answers the “What if …” question. This is something parents of children with ASD need to anticipate for medical visits. Medical personnel may ask parents to be sure to bring the indicator for change that they use at home or that their child uses at school (see Figure 2) to an appointment. This can be inserted into a picture schedule of activities or even into a story describing a procedure. Parents of verbal individuals with ASD can ask or write out “What if …” questions to prepare the child. Examples of “What if …” questions are:

• What if the doctor is late for the appointment?
• What if the doctor takes your temperature before she listens to your heart?

Predicting helps the child increase flexibility and provides some semblance of routine in the face in the change.

Countdown

A simple countdown of 5, 4, 3, 2, 1 using a countdown strip can help the child understand that an event will last only a short while. For a quick, one-time use, the numbers could be written on a piece of paper and crossed off as the events happen or as time passes (i.e., such as time passage to take temperature). For children with special interests, the special interests could be incorporated into a countdown strip. One mom we know whose son likes teddy bears carried a small cup and plastic teddy bears with her. As time passed, she would count down by putting the teddy bears in the cup.

Wrap-Up

Wrap-up is a celebration of the completed activities. Most often, the wrap-up should include reinforcers--items that the child prefers. They could be presented in a form of a “First/Then” card (see Figure 3) or a series of cards that have pictures of potential preferred items. This step is essential because the child or adolescent with ASD has completed a very challenging activity overcoming many ASD-related obstacles. The wrap-up ends the experience on a positive note.

Summary

Priming, predicting, countdown, and wrap-up are strategies that can be easily incorporated into medical visits. Compatible with the needs of individuals with ASD, these four easy-to-use strategies have the flexibility to be easily implemented in doctors’ or dentists’ offices or hospital settings.

Note. Help your child’s nurses and doctors understand your child with ASD by giving them a poster designed to provide medical professionals with some tips for working with an individual with ASD. It’s available free from the Autism Asperger Publishing Company (www.asperger.net or 913-897-1004).

References
Hudson, J. (2005). Prescription for Success: Supporting Children with Autism Spectrum Disorders in the Medical Environment. Shawnee Mission, KS: Autism Asperger Publishing Company.

Sakai, K. (2005). Finding Our Way: Practical Solutions for Creating a Supportive Home and Community for the Asperger Family. Shawnee Mission, KS: Autism Asperger Publishing Company.

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Salute: Not Until We Have Coverage

How A Marine Wife and Mom of Three Became an Advocate for Thousands

Karen Driscoll is a lot like any other mom. She loves her three children--two sons and a daughter--and would do whatever needed to be done to make sure they receive the healthcare and education they need. As a child with autism, her son, Paul, 10, needs considerably more care than other children do.

While they lived in California, he got the care he needed, through his public school and Medicaid. “We began using applied behavior analysis (ABA) to help with the overwhelming behavior issues Paul had that interfered with his ability to function,” explains Driscoll. “He made amazing progress. From being barely able to speak, he progressed to speaking in full sentences.” Even more important to his parents, he began to interact with them. “His response to ABA treatment was dramatic.”

When her husband, who is a Marine, was transferred to Quantico, Virginia, near Washington, DC, everything changed. “Paul’s school didn’t offer an ABA program and the school district doesn’t fund in-home therapy programs. We found out there was a 10-year waiting list to get services from the Virginia state Medicaid waiver program. We went from good to literally nothing.”

They immediately enrolled Paul in an at-home program, fully expecting the military’s insurance program to pay for it. At first, it did. In 2005, though, the Driscolls received a letter from the insurance carrier, Tri-Care, explaining that its new program, Enhanced Health Care Option, ECHO, was terminating Paul’s coverage for ABA. “ECHO began strictly enforcing a policy requiring all individuals providing hands-on services to be board-certified behavior analysts,” explains Driscoll. “Finding a certified BCBA to deliver hands-on services is nearly impossible.”

Not Just Paul

Having Paul’s care cut off was horrifying. Then Driscoll found out that her family was not alone. “Thousands of families were affected by this change.” That reality—that military families with spouses literally sacrificing their lives for their country could not get coverage that would enable their children to lead healthy productive lives—galvanized Driscoll. From being a concerned and loving mother, she became a tireless, passionate advocate on behalf of military families who have children with autism.

She networked with other military families and worked with them to coordinate efforts. She met with military leadership, prepared papers, and briefed professional staff on Capitol Hill and members of Congress. Two and a half years later, the fight continues. “Under the current insurance program, only 5 percent of military children with autism are getting some level of coverage while 95 percent are not receiving the medically prescribed treatment they require,” Driscoll explains.

The problem is not lack of support. Driscoll and the other military parents she works with have the support and active advocacy of senior military leadership, including General Robert Magnus, the Assistant Commandant of the Marine Corps; Vice Admiral Adam M. Robinson Jr., the Navy Surgeon General; and General Richard Cody, the Army’s Vice Chief of Staff. They also have the tireless advocacy of Annette Conway, wife of the Marine Corps Commandant, General James Conway; Ellen Roughead, wife of the Chief of Naval Operations, Admiral Gary Roughead; and Sheila Casey, wife of the Army Chief of Staff, General George Casey.

“Our advocacy did work. Congress passed the National Defense Authorization Act, fiscal year 07, which required TriCare to solve the problem,” she says. “The problem was that TriCare’s “solution” to the problem created a program so complex that no providers signed up. “Today, no child is getting any level of care from this new policy. Aggressive action is needed to correct this shameful neglect.”

Driscoll, the coalition of parents working with her, and the advocacy groups that support them believe that Congress and the Secretary of Defense need to direct a federal solution and recognize the medical necessity of autism treatment, specifically ABA therapy. “TRICARE segregates autism treatment to a separate program (ECHO) requiring separate enrollment and eligibility requirements,” says Driscoll.

Further, TriCare determines who is eligible and who is not. “Delays in treatment are experienced on a regular basis (sometime upwards of 2 years), and denial of services is more frequent than I want to count. I believe we have an ethical obligation to provide our military children with the medically prescribed treatment they require.”

She and other parents have met with a number of legislators, explaining their dilemma. “We have talked with staff from Senators Kennedy, Webb, Warner, Schumer, and Graham as well as counsel and professional staff of the Armed Services Committee. Given the current climate, our military families are facing an extreme set of circumstances. I am humbled by the concerned interest of our lawmakers in the well being of our military families.” She is hopeful, but that hope will not slow her down.

Driscoll doesn’t plan to rest until every child with ASD in a military family gets the treatment he or she needs. “It’s heartbreaking to think that this issue is affecting those people we are sending overseas to fight for their country. It is an issue that deserves immediate and aggressive intervention by Congress.” If Karen Driscoll has anything to do with it, that intervention will happen.

In recognizing Driscoll’s tireless efforts, OAR is saluting her as well as the leaders lending their support and all the men and women serving in uniform today. Driscoll shows that leading by example extends to Marines’ wives, too. Semper Fidelis, Karen.

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RUN FOR AUTISM News

Big OAR Teams Prepare For Fall’s Big Marathons

As the weather turns warmer and flowers bloom throughout the northern part of the country, many runners get out on the road again, intent on running a fall marathon. OAR is an official charity partner with two of the largest marathons in the country, and will once again have big RUN FOR AUTISM teams at both the Bank of America Chicago Marathon and Marine Corps Marathon in October. The races may seem a long way off to some, but serious participants will soon begin training with weekend-long runs to prepare for running 26.2 miles on race day.

OAR has set a goal to have 1,000 runners raise $1 million dollars for autism research in 2008. “Since the Marine Corps and Chicago Marathons provide the foundation of our fundraising effort, it is important that these two races continue to build each year. To do this, we need to have many of our past alumni runners return and also find new runners that want to join the team.” says RUN Director Doug Marocco. “In 2007, we hit impressive milestones in terms of participation and fundraising. Now that RUN FOR AUTISM has become a more established and visible charity program, participants are aware that they can run and choose RUN FOR AUTISM as a way of supporting the autism cause.”

Hoping for a Not-So-Hot 2008

The 2007 Chicago Marathon turned out be hot. Literally. Officials cancelled the Marathon while in progress due to extreme heat. The city’s emergency systems were exhausted because of the sheer number of runners that needed medical attention.

Runners completing the race in under four and a half hours made it to the finish line as “official finishers,” including many from the RUN FOR AUTISM team. Happily, none of the OAR RUNners suffered any serious problems because of the heat.

This year, the Chicago Marathon will once again sell out in record time with 45,000 registered participants, proving that last year’s heat has not deterred runners from this year’s race. Now promoting a new title sponsor, the Bank of America Chicago Marathon continues to be one of the most sought-after entries in the sport of running thanks to typically cool weather, a flat course, and 1.5 million spectators to cheer runners on.

“If you want to get a race number for the Bank of America Chicago Marathon, you better act soon,” explains Marocco. “This is OAR’s fourth year as an official charity partner, and our experience tells us that our limited number of entries will go quickly. Once the charity entries are used, we will start a wait list for additional entries in case any more become available, but there is no guarantee.”

The People’s Race

Now entering its sixth year as a charity partner with the Marine Corps Marathon, OAR has seen the team grow from 63 participants in 2003 to over 300 in 2007. The RUN FOR AUTISM is just one part of OAR’s “Autism Weekend,” which also includes the Applied Autism Research and Intervention Conference and the Runners’ Recognition Dinner.

The Marine Corps Marathon, known as the “People’s Race,” celebrates the opportunity to see our national monuments on foot with 30,000 other runners. A shorter 10K race is held over part of the same course in conjunction with the Marathon. Both events use the same hilly finish line near the Marine Corps War Memorial depicting the famous flag-raising from the WWII Battle of Iwo Jima. “The nice thing about the Marine Corps Marathon and associated 10K is that you can run the race as an individual or gather up a team of runners that want to run or walk in support of autism research. So find some friends and make a day of it in our nation’s capital,” suggests Marocco.

Both the Bank of America Chicago Marathon and Marine Corps Marathon will be highly sought-after entries once open registration closes, and OAR is limited in its number of charity entries. Race registration can be completed on OAR’s Web site, and entries are available on a first-come basis.

For more information or to register and join the team, please go to OAR’s Web site at www.runforautism.org or e-mail run@researchautism.org.


RUN FOR AUTISM Prepares for a New York City Encore

One of the highlights of the 2007 RUN FOR AUTISM was OAR’s selection as a charity partner with the New York City Half Marathon presented by Nike. It was the first time the race designated official charities. Based on last year’s success and the effort of OAR’s first team of runners, the race organizer, the New York Roadrunners (NYRR), has invited OAR for an encore this year and increased OAR’s number of guaranteed entries from 30 to 50. Runners are already lining up to be part of OAR’s team.

This year’s race will take place on Sunday, July 27, and will retrace the Olympic Trials course that was used for the men’s selection race last November. The race starts in mid-town at Central Park. After moving through the rolling hills of the Park, the course heads down 7th Avenue through Times Square and on to its finish at Battery Park in lower Manhattan in clear view of the Statue of Liberty and Ellis Island.

The half marathon is unique among all the races hosted by the NYRR, including the world-famous New York City Marathon. According to Richard Hulnick, business manager and charity program director, NYRR, “The half marathon is the only race that runs through Times Square. The only other time the street is closed is New Year’s Eve.”  The NYRR expects the half marathon to grow to a field of 30,000 over the next five years and sees the race ultimately rising to the level of its prestigious marathon.

OAR’s first RUN FOR AUTISM-New York team of 18 runners raised more than $32,000. OAR is looking to use all 50 entries. “As a condition of participation, the NYRR requires charities to have a minimum fundraising requirement of at least $1,000 per runner,” says Doug Marocco, OAR’s RUN FOR AUTISM director. “As you can see from last year’s results, that didn’t seem to be much of a problem.”

For more information or to sign up for the RUN FOR AUTISM-New York, please go to www.researchautism.org or e-mail run@researchautism.org.


From Rocking Out to Running for OAR: A Marathoner Tells His Story

For Jay Kijek, life is a lot like running a marathon. You prepare as best you can, then get on the road and see where it takes you. The 30-year-old OAR marathoner recently left a career managing rock-n-roll bands for a career most would consider neither as glamorous nor as lucrative: teaching disabled children, some with autism, at Chicago’s Northside Learning Center, for young people ages 14 to 21.

Working with children with disabilities was so appealing to Kijek that he enrolled in school to get a degree in special education, something he expects will take three years. “The job is probably the best job I’ve ever had. The teacher I work with has taught there for a number of years, and she’s been a great mentor to me. The kids get along well with me. We relate through music. I deejay their dances. We talk about current events. I enjoy getting in their heads and relating to them.”

Kijek says that autism is a disability that fascinates him because people with it can often be amazingly gifted at the same time they are disabled. “I once watched a documentary that featured a kid who couldn’t function socially, but he could sit down and play jazz music without learning it. The concept is still amazing to me.”

A Year of Crossing Finish Lines

For Kijek, 2007 was a year of setting goals. He left his music job in August, got the school job in October, and was in school himself in September. It was also the year he decided to run his first marathon.

“I wanted it to be a year of goals. I was writing music. I was getting closer to my family and reconnecting with friends after being in a career that didn’t leave much time for either. When the marathon popped up in a runner’s magazine, I decided to do it to see if I could. I wasn’t much of a runner or even much of an athlete.”

He bought a book called The Non-Runner’s Marathon Trainer in March. By June, he had started his training. “It’s a 16-week program,” Kijek says. Sure enough, October found him at the Chicago Marathon’s starting line.

In fact, though, Kijek had already completed another kind of marathon in his fundraising efforts for OAR. The first-time marathoner first heard about OAR on the marathon Web site. “OAR was the one I was most interested in,” Kijek explains. “When I researched OAR, I found out it was in the top 5 percent of independent charities and I thought its message was really good.” Plus, the obvious link to his new career made it the perfect choice.

He raised $1,742 in 2007 and worked as a volunteer at OAR’s Half-Marathon Expo. “I want to be as much a part of OAR’s efforts and the marathon as I can,” he says.

Despite not being able to finish the marathon because it was halted due to unusually hot weather, Kijek is pleased that he participated. “I believe I did somewhere around 20 miles. I wasn’t doing it to make a good time, I was doing it to have a good time. I talked to people along the way, stopped to chat with friends and family, for pictures. I loved taking a tour of my city via the marathon and was touched by how many people cheered for us runners.”

He is ready for another attempt. “This year, I want to know I can complete 26.2 miles. I was glad they stopped it last year but I’m ready for it again.”

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