Message: On the Time 100 and Autism Moms

By Peter Gerhardt, Ed.D.

“While autism remains a significant, challenging, and sometimes devastating developmental disorder, adults with autism can be interesting and helpful neighbors, dedicated and competent employees, and engaging and worthwhile friends.”
............ ...........................Peter F. Gerhardt, Ed.D., The OARacle, April 2010

Peter Gerhardt, Ed.D.

Last month when I wrote about the significant advances in autism awareness (and some of the continuing challenges, particularly for adults), little did I suspect that autism awareness would jump to unprecedented heights this month with the inclusion of Dr. Temple Grandin as one of 2010’s “Time 100: The 100 people who most affect our world.”  Dr. Grandin’s life story is widely known both inside and outside the autism community but to see her recognized in this elite forum is an honor well deserved and, at the same time, a stunning measure of how far autism awareness has come. OAR applauds Time’s choice and congratulates Dr. Grandin for her life’s work and the inspiration she continues to provide to persons with autism and parents of children of all ages.

It’s so fitting that the news of this breakthrough milestone came right around Mother’s Day. Dr. Grandin’s mother, Eustacia Cutler, like many mothers faced with a child’s diagnosis with autism in the early ‘50s, refused to accept that bad parenting was the cause, and institutionalization the sole and unavoidable option for her daughter. On the strength of Mrs. Cutler’s love and unshakable belief in Temple’s innate potential coupled with her daughter’s relentless quest to learn and succeed, the young girl, written off by the experts as having no prospects in life, stands recognized today as one of the Time 100.

Dr. Grandin’s success and this great honor serve as a tribute Mrs. Cutler and to autism moms everywhere. Autism presents families with unforeseen challenges and stresses. And while every member of the family is impacted, involved, and important, the majority of the day-to-day responsibilities fall, more often than not, to the mothers -- mothers like Mrs. Cutler, for whom a diagnosis of autism has been a call to action and who believe in the innate potential of their children to have happy, fulfilled, engaged, productive, and integrated lives and dedicate themselves to that end.

In many ways it was the concerned, knowledgeable, and insistent voice of the autism community led from the front by autism moms (and dads, siblings, and grandparents, of course), that brought about such critically important legislation as the Individuals with Disabilities Act (IDEA) and the Combating Autism Act. Theirs were the same voices that helped form innumerable local and national advocacy groups such as the Autism Society of America and its many chapters beginning in the ‘60s and ‘70s and continued to drive and support the emergence of new parent-inspired groups like NAAR and CAN in the ‘90s and Autism Speaks and OAR since the year 2000. Theirs are the voices that help bring in experts to train teachers in their children’s schools. And theirs are the voices that refuse to give up and, instead, grow louder with each passing day.

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OAR News

Research Competition Draws Record Response

On April 2, the first phase of OAR’s 2010 Applied Autism Research Competition came to a close with the receipt of a record 101 research pre-proposals from researchers across the United States as well as from Canada, Israel, and Scotland. 

After an internal review to ensure that each of the applications met the criteria put forth in the Request for Proposals, OAR sent the pre-proposals out for review to members of OAR’s Scientific Council and a corps of 50 external peer reviewers.  As part of the initial review process, three doctoral-level reviewers, including at least one member of the Scientific Council, reviews each pre-proposal. For the 2010 competition, that means a total of 303 reviews. Once those are completed, OAR records the scores and reviewer comments in a more user-friendly format to support the screening process and later to be shared as constructive feedback for the principal investigator.

“The insightful comments provided by our reviewers are of great value in determining the significance of the proposed research question,” says Scientific Council Chairman Peter Gerhardt, Ed.D.  “In addition to helping ensure only the highest quality research gets funded in the final stage of the competition, these comments are also shared with each applicant.  This helps them in subsequent grant applications and adds to the quality of future competitions.”

“If past history is any indication, we can expect somewhere between 30 and 40 pre-proposals to be sufficiently well reviewed to warrant a request for a full proposal,” explains Dr. Gerhardt.  In the second round, as in the first, three reviewers review the full proposals, but this time two are from the Scientific Council.

In the third and final round of reviews, all three reviewers are members of the Scientific Council.  “This is a very competitive process,” notes Dr. Gerhardt. “Decisions are often made according to degrees of excellence rather than good research versus bad research.”

OAR’s Scientific Council will conduct the final review on October 28, and OAR’s Board of Directors will approve the final grant awards during its meeting on October 30.  Funding begins January 1, 2011.

CFC and Workplace Campaigns on Pace for New Record      

With reports still trickling in and a final tally still a few weeks away, the results of the 2009 Combined Federal Campaign (CFC) and a number of other state and private sector workplace campaigns are pointing toward a new record for OAR.  In 2006, total pledges for OAR reached $323,000.  The latest tally is just over $310,000 and has the potential to surpass the previous record if the results from the campaigns still not in come close to previous years.

“This is a pleasant surprise,” says Mike Maloney, OAR’s executive director.  “Given the state of the economy and the fact that the majority of these donors are active duty members of our military, many serving in harm’s way, we didn’t expect this level of success.  Naturally, we are thrilled and again amazed at the collective generosity of federal and state employees and our men and women in uniform.”

The CFC is the federal government’s annual charitable campaign.  OAR participated first in 2003 as a local agency in selected CFC drives in the National Capital area, which includes the District of Columbia, Maryland, and Virginia.  Since 2004, OAR has participated as a national charity as a member of the Health and Medical Research Charities of America federation.  Counting this year’s results, participants in the CFC and other workplace campaigns have pledged more than $1.7 million to OAR.

“These campaigns are virtually impossible to predict,” says Maloney.  “Clearly, autism as a cause and OAR’s mission seem to connect.”

To qualify for the CFC, a charity must apply and meet a series of standards each year. Principal among these is to have a ratio of expenses to revenues of less than 25 percent and to be eligible nationally to demonstrate viable program services in at least 15 states in the past three years. OAR met the 15-state requirement six years ago and had a qualifying ratio of 15.87 percent for the 2009 CFC campaign.

According to Maloney, favorable reviews by independent charity watchdog organizations like Charity Navigator may have helped.  Last year, OAR received Charity Navigator’s four-star rating, symbolic of an efficient, well-managed charity.  Charity Navigator is the largest and most utilized, independent evaluator of charities in the U.S. Its four-star rating signifies that the charity “exceeds industry standards and outperforms most charities in its Cause.” Only about 25 percent of charities they review receive four stars.

Before that, beginning in 2005 and in every year since, OAR received the Independent Charities Seal of Excellence. The Seal of Excellence is awarded to the members of Independent Charities of America (ICA) and Local Independent Charities of America that have, upon rigorous independent review, been able to certify, document, and demonstrate on an annual basis that they meet the highest standards of public accountability, program effectiveness, and cost effectiveness. These standards include those required by the U.S. government for inclusion in the CFC. According the ICA’s estimate, of the 1,000,000 charities operating in the United States today, fewer than 50,000, or 5 percent, meet or exceed these standards. Of those, fewer than 2,000 have been awarded this Seal.

For more information on OAR’s participation in the CFC or state and local charitable campaigns, please contact Mike Maloney at OAR.

Conference Schedule Reveals Powerful Lineup, Longer Sessions

On October 29-30, the Sheraton Crystal City will open its doors to attendees of OAR’s 2010 Applied Autism Research and Intervention Conference.  During these two days, around 300 parents, educators, and autism professionals will have the opportunity to choose from 16 unique presentations on a range of topics related to the most current research and evidence-based intervention.

OAR has just released the speaker schedule for this event, posted at www.researchautism.org/news/conference/schedule/index.asp.  In a change from last year’s format, OAR has extended the time for each presentation.  Breakout sessions will be 75 minutes in length, and keynote presentations will last 80 minutes.  Additionally, in another change from previous conferences, there will now be a fourth keynote speech to close Saturday’s schedule.

Dennis Reid, Ph.D., the director of the Carolina Behavior Analysis and Support Center, will kick off the conference on Friday with his opening keynote address on “Staff Training and Retention.”  After three break-out sessions, attendees will then hear a closing keynote address by Karen Pierce, Ph.D., the director of clinical research at the Autism Center of Excellence at the University of California, San Diego, titled “Advances in the Early Identification of Autism.”

Saturday’s events will begin with “Outcomes after Leaving High School,” presented by keynote Paul Shattuck, Ph.D., assistant professor at Washington University in St. Louis, MO.  (Read more about it in this month’s Speaker Profile [link]).  Later, Stephen Shore, Ed.D., and Zosia Zaks, M.S., M.Ed., both accomplished adults on the autism spectrum, will together provide a fascinating closing keynote address, “Dating on the Autism Spectrum.”

The 2010 lineup is sure to offer a fresh, thought-provoking, and entertaining array of speakers whose expertise covers topics related to education and intervention across the lifespan that will be of interest to individuals with autism, their families, and those dedicated to serving the autism community.   To register, view the complete schedule, or obtain more information on this year’s conference, visit www.researchautism.org/news/conference.

Graduate Grant Applications Due June 4

While reviewers are carefully evaluating pre-proposals for OAR’s 2010 Applied Research Competition that just closed, this in no way means a break for OAR staff.  The deadline for applications in the annual Graduate Research Grants Program is less than two weeks away.  As a result, the staff is hard at work cataloguing applications already arriving at the office and preparing to support the coming review process.

This annual competition is open to graduate students and post-graduate interns conducting research in disciplines related to assessment, intervention, and support for learners with autism and their families.  Established in 2004, this program seeks to fund studies that will likely produce practical and clearly objective results that may aid parents, families, professionals, and people with autism to make more fully informed choices that will lead to healthier and happier lives.

The due date for applications is June 4, 2010.  For this year’s competition, OAR will consider making up to 15 awards, for a total of $25,000 in grants.  To download the application and for more information, visit www.researchautism.org/professionals/graduategrants/index.asp.

Conference Keynoter Paul Shattuck to Discuss Future Prospect for Adults on the Spectrum

For its eighth Annual Applied Autism Research and Intervention Conference, OAR is pleased to announce that it has confirmed four keynote speakers (find out who the other three are in this month’s article about the conference above). One of those speakers is OAR-funded researcher Paul T. Shattuck, Ph.D., an assistant professor at the George Warren Brown School of Social Work at Washington University in St. Louis, MO. Shattuck conducts research aimed at improving systems of care and services for people with autism and their families. He is especially interested in two key service transitions: getting a diagnosis in early childhood and exiting high school in adolescence.

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Paul Shattuck, Ph.D.

What Paul Shattuck, Ph.D., most wants people to take away from his keynote address at the fall OAR conference are these key points: A) Autism does not end in childhood. It is a lifelong condition for most. B) Developmental delay does not mean developmental arrest. Most people with autism continue growing, learning, and changing across their life spans just like everyone else does. C) Autism occurs across all demographic segments of society. Roughly 20 percent of all children in the United States live below the poverty line. Youth with ASDs from poor families are having a much more difficult time after exiting high school as compared to their more affluent peers. These youth need extra support.

“I’ll be talking about findings from my OAR-funded study of youth with ASD,” says Dr. Shattuck. “I have data from a large nationally representative sample of young people with autism who were in their teens at the start of the study in 2001 and most of whom are now out of high school and in their early 20’s.”

His talk will also include an issue that is paramount in the minds of many parents, clinicians, and researchers in the autism community today: Young adults with autism and their independence. “We know virtually nothing about what happens to young people with autism based on nationally representative data. If we want to foster positive policy and services change then we need good quality data about these outcomes.” He has been involved in Advancing Futures for Adults with Autism, a national consortium, which includes OAR among its partners, created to set national priorities for adults on the autism spectrum and to transform public policy and programming for teens and adults with autism spectrum disorders.

As a doctoral student in Wisconsin, Dr. Shattuck worked as a research assistant for Marsha Seltzer, Ph.D., on a large study of adolescents and adults with autism. “She was a great mentor,” he says, and that study got him hooked on looking at autism and its effects both on the people with autism and their parents and caretakers.

When his son, now 14, faced special health care challenges, Dr. Shattuck got to know a lot of families that had children with autism, which gave him an intimate view of the challenges those families face. “It’s very compelling to see what happens in the families of very close friends as their kids age out of high school. Children with developmental disabilities have access to special educational services, but it’s kind of like driving off a cliff after they graduate from high school. We know how difficult the transition to adulthood is for most adolescents but that transition is often even more tumultuous for kids with disabilities. Just when they most need support, the rug is pulled out from under them.”

He is particularly interested in the intersection between social welfare and autism. “A particular theme I will likely drill into is how the interaction between social disadvantage (e.g. poverty, being a minority, having parents with low educational attainment) and autism severity creates a ‘double whammy’ of disadvantage. I am generally finding that the young people who are both poor and severely affected are enormously worse off than all the others. And it seems that family financial resources become an even stronger predictor of service access and outcomes after youth exit high school.”

That intersection is one that has long interested him. He received a Ph.D. in social welfare, a field of study that combines social sciences and public health. “I like building bridges across disciplines,” he says. It not only suits his personality, it has given him the opportunity to look at how policy affects development in people with disabilities and how people with disabilities and their families and caretakers can more effectively advocate for changes in policy.

In addition to his academic work, Dr. Shattuck consults with nonprofit disability advocacy groups on fundraising and with strategic planning. He served to help develop the research priorities for the Interagency Autism Coordinating Committee’s Strategic Plan. He is currently serving as an advisor to the Missouri Autism Guidelines Initiative.

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News from the RUN FOR AUTISM

Come With OAR to Rock ‘N’ Roll
Time to Get the Race On

Are you looking for a big race experience? Then join OAR and the RUN FOR AUTISM for one of the Rock ‘N’ Roll Series half marathons coming up this summer and fall. In the coming months, OAR will field half marathon teams in Chicago on August 1, Virginia Beach on September 5, Philadelphia on September 19, and San Antonio November 14.

OAR is entering its third year as a charity partner with Elite Racing, Inc.’s Rock ‘N’ Roll Series, which hosts racing events all across the country. You can rock out as you run with music from bands stationed every mile along the course and a headliner concert to cap off race day.

Celebrate summer in the Windy City at the Rock ‘N’ Roll Chicago Half Marathon! This perennially sold out race features a fast, flat course with great views of Chicago. This race is increasingly popular every year, and spots are limited, so be sure to register soon. Learn more about the event at http://chicago.competitor.com.

The Virginia Beach Half Marathon has become a fall staple for many runners, thanks to a beautiful, flat course and a finish line party on the beach. Held annually on Labor Day weekend, consider this race the perfect way to say farewell to summer and embrace the crisp fall months ahead. Bring friends and family to share in the fun! Read more at http://virginia-beach.competitor.com.

Rock’n’Roll Philadelphia makes its RUN FOR AUTISM debut this September.  This notable race has seen a history of elite runners, including Olympic Marathon champion Ryan Hall.  The Rock’n’Roll series recently acquired the race and will infuse even more fun into an already spectacular race.  For more information, go to www.philadelphia.competitor.com. 

Stay tuned and read more about the Rock ‘n’ Roll Philadelphia and San Antonio races in next month’s OARacle.

Don’t miss out! Sign up today to RUN FOR AUTISM at one of these Rock ‘N’ Roll events at www.firstgiving.com/OAR. If you’d like more information, please e-mail run@researchautism.org.

MCM Offers a Training Club and a Weekend Full of Events for OAR’s Runners
More than Just a Marathon

This year’s 35th Anniversary Marine Corps Marathon sold out in less than a week, and with the 10K opening just days ago, the 2010 event is shaping up to be the best since OAR first participated in 2003.

Although the race day isn’t until October 31, 2010, RUN FOR AUTISM participants are looking ahead. For many DC-area participants, May 15 marked the kick off of their training for the marathon. Runners gathered at East Potomac Park in Washington, DC to meet with other RUN FOR AUTISM participants, RUN Director Lily Matusiak, and the DCFit coaches who will lead them through their training. After an explanation about the program and a running seminar, participants hit the road for a three-mile timed run. The times helped the DCFit trainers organize its group for the training runs that began the next weekend.

The Marine Corps Marathon weekend officially begins on Friday, October 29, with the Health and Fitness Expo. Like last year, the Expo will be hosted at the Walter E. Washington Convention Center in Washington, DC. Runners can shop for running apparel and training and nutrition products and take in free entertainment. RUN FOR AUTISM representatives will be present at the OAR booth to greet runners throughout Friday and Saturday.

On Saturday evening, OAR will welcome RUN FOR AUTISM participants, friends, and family to the annual Runners’ Recognition Dinner where runners can share stories and celebrate their accomplishments before the race. OAR leaders will also make remarks and honor outstanding fundraisers.

Race day kicks off bright and early Sunday morning. Beginning at 6:00 a.m., runners will be welcomed to the OAR tent in the Charity Village to prepare for their race. The marathon and 10k will both begin at 8 a.m. at their respective start lines. By 1:15 p.m., marathoners will have had to “beat the bridge,” crossing from Washington, DC, over the 14th Street Bridge into Arlington, VA. As runners arrive back at the Charity Village, greeted by family, friends and OAR staff, they can relax, take in their accomplishment, and receive their OAR Finisher’s Medal.

It’s not too late to sign up.  OAR has guaranteed entries for both the Marathon and 10K race.  If you are interested in participating and have not yet registered, go to www.firstgiving.com/OAR today!  And you still have plenty of time to join the RUN FOR AUTISM training group, there is still plenty of time to get involved. Find out more and register at www.dcfit.net. For more information on the marathon or the training group, contact RUN FOR AUTISM Coordinator Julia Hornaday at run@researchautism.org or (703) 243-9712.

Please note that the OAR Annual Conference is scheduled in conjunction with Marine Corps Marathon weekend. Runners who raise over $250 will be welcome to attend the conference at no cost. Please contact akruszyna@researchautism.org for more details.

New TRI FOR AUTISM tri tank available

OAR is excited to announce the release of its first TRI FOR AUTISM tri top by Sugoi, one of the leading manufacturers of technical clothing for athletes. This “Fuel Tri Tank” style top is equipped with two rear fuel pockets, a front zipper, and mesh side panels for cooling ventilation. The sharp navy blue and teal top features the yellow OAR sun logo on the front and the “TRI FOR AUTISM” logo on the back.

“The TRI FOR AUTISM team has been asking for something like this,” says Lily Matusiak, director of the RUN FOR AUTISM and a triathlete herself. “It’s a piece of gear they need and also allows them to show their support for the cause and our TRI FOR AUTISM program.”

The new tri tank is available for purchase at a cost of $80.00, which includes a $25.00 donation to support autism research.  OAR will offer the tri top to members of its TRI FOR AUTISM team at cost.  To order or receive more information, please contact tri@researchautism.org or call Sarah Schuyler at 703-243-9710, x224.

RUN FOR AUTISM - Pittsburgh Runs Strong and Raises Almost $15,000

With a rise in the number of marathons and half marathons around the country, OAR’s RUN FOR AUTISM staff is always on the lookout for new, fun races. After hearing about the success of the Pittsburgh Marathon after its return to the race scene in 2009, OAR decided that Dick’s Sporting Goods Pittsburgh Marathon would make a great addition to the RUN FOR AUTISM 2010 race calendar.

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OAR runner Joe Pecora takes a moment to enjoy his accomplishment with another runner.

And what a jam-packed and exciting race weekend it was! It kicked off with the GNC Live Well Pittsburgh Health and Fitness Expo where RUN FOR AUTISM Director Lily Matusiak and OAR volunteers got to meet many of the first-ever RUN FOR AUTISM- Pittsburgh team members, who came from all over the country to run the full marathon, half marathon, or marathon relay.

At 7:30 a.m. on May 2, the gun went off and 16,000 runners including 43 in RUN FOR AUTISM singlets began their journey through the Steel City. Within 20 minutes, the skies opened, cooling off the runners but making for a wet run.

The rain couldn’t stop the RUN FOR AUTISM team. And neither did the bomb scare that came during the race. OAR’s runners just kept running.  Everyone finished strong with smiles on their faces, whether they ran their fastest race or decided to enjoy an easy pace, after taking in all the sights of the challenging but scenic course.

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As a special thanks to all of his supporters, Todd Jackson personalized his t-shirt with a listing of all of his donors, donning it after he crossed the finish line.

First-time marathoner Todd Jackson ran a very impressive 3:52 marathon and raised over $1,500 for autism research. As a special thanks to all of his supporters, he personalized his yellow RUN FOR AUTISM t-shirt with a listing of all of his generous donors, donning it after he crossed the finish line.  James Kazil wasn’t far behind, completing his first marathon in just under four hours. In honor of a family member with autism, he raised over $1,600.

The half marathon drew the interest of many on the OAR team, including Roger Dunlap, Jr., and Monica Cooney. Dunlap, who is new to the race scene but a veteran fundraiser, raised $1,000. Experienced marathoner and half marathoner Cooney was excited to run her second Pittsburgh Half Marathon. When she found out that OAR was an official charity partner, she immediately joined, bringing in more than $750 in honor of her older brother, Ronnie.

Three marathon relay teams in RUN FOR AUTISM race singlets took on the Pittsburgh course. Leslie Curl organized two teams of friends and family to run a cumulative 52.4 miles and raise $1,350. Holland’s Heroes “made the decision to make all of [their] training hours and sweat go towards something good!” And they did just that, surpassing their goal and raising $535.

With such an amazing and enthusiastic team of runners, volunteers, and supporters, OAR and the RUN FOR AUTISM had a fantastic first year participating in the Pittsburgh Marathon, raising almost $15,000. Next year, we look forward to partnering with the Marathon again, fielding an even bigger team, seeing some familiar faces, we hope, and avoiding any calls for bomb squads.

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RUN Profile

OAR Talks to Boston Marathoner Jose Rivera
Ask Me Why I Run

Ask Major José Rivera why he runs and he’ll likely give you a one-word answer, “Joseph.” Joseph, age 7, is his and his wife, Margaret’s, youngest son. It’s not an uncommon answer among OAR runners. So many run for sons and daughters, for nieces and nephews, godchildren, friends’ children. That’s a lot of very good reasons to run for OAR.

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Triumphant in so many ways, Major Jose Rivera holds up his OAR's Finisher's Medal after completing the Boston Marathon's sister race on his Iraqi military base.

But Major Rivera’s story is a little different. He ran a two-person marathon on a military base, Camp Adder, while on a year-long deployment to Iraq. This is his third deployment since 2002, having also served in Afghanistan and Kosovo.

Camp Adder, he tells us, is located in Southern Iraq, near the city of Nasiriyah. He’s been there for four months and he’s scheduled to go home, to Mission, TX, to Margaret and Joseph and his two older children, Kyle, 18, and Korinne, 14, before the end of the summer.

Despite the many challenges of running a marathon on a military base in Iraq and raising money while training, Major Rivera well surpassed his goal of $2,500, raising a total of $3,773.

We talked to him by e-mail about why running a marathon on a military base in a desert in a war-torn country was so important to him.

OAR: What made you decide to run a marathon on your own while stationed in Iraq?

Maj. Rivera: The toughest challenge of being deployed is surviving the days away from those you love. In my particular case, it pains me deeply to be away from Joseph and not being able to help him with the everyday challenges autism lays in front of him. Those of us blessed to know him and love him understand the wonderful individual he is and the unlimited potential he has.

To help him while I am away, and to help many other special children like him, I decided to run the Boston Marathon's sister race here in Iraq. [A sandstorm derailed his plans to run the marathon on April 17 so Major Rivera and his running partner and colleague, Major Laura Jane Stephens, ran the race on April 18 instead.]

OAR: What’s Joseph like?

Maj. Rivera: Probably not that different from any other 7-year-old boy but special to us. He loves trains, has a great singing voice, is always happy, and shows great concern for others. He is very sweet. Not to brag, but he is pretty handsome too. [Through Skype,] I get to talk to him almost every day before he goes to bed and I go to work.

OAR: How did you hear about OAR and our RUN FOR AUTISM program?

Maj. Rivera: I stumbled upon OAR’s website when I was looking for an autism-related charity that I could become involved in, because I felt like I could not do much to help my son while I was deployed. I was very proud to wear the OAR singlet.

And I’m not the only military service member facing the challenge of parenting a child with autism. There are lots of military families who are challenged by the spectrum. The moving every three or so years and deployments make the experience even more difficult. I do have soldiers with children in the spectrum here. In fact, a young sergeant in my human resources section has a 4-year-old child with autism. She is also a single mother, which makes matters more complicated. Her mom is caring for her son while she is deployed.

OAR: Now that you are a month out from the run, give our readers your reflections on the experience of training for the run and the run itself.

Maj. Rivera: I loved the run, or, at least, miles 1 to 19. Miles 20 to 26 were rough. But, I am so glad I did it. It is an amazing feeling to go into it knowing it will be the single most physically challenging event of your life and have no doubt that you will triumph over the elements, the pain, and the exhaustion. My time was 4:21:53. The course was very challenging and unpaved, really windy too, but it was fun!I finished 57th of about 240 finishers in the Boston Marathon in Iraq.

Major Stephens trained and ran with me. She is an experienced long distance-runner and triathlete. She taught me to “eat” the race in little bites. During training, she would always tell me “the first half will fly by. When we get there, we will only have a half marathon to go. When we get to 16, we only have a 10-miler to run. At 20, we only have a 10K to run. At mile 24, we only have an Army Physical Fitness Test run to go and anybody can do that.” That is how we did it and she stayed with me and kept encouraging me the last six miles that were so tough on me.

It was an amazing feeling to receive a Boston Marathon finisher’s medal. I had planned on putting it in a shadow box. However, something really special happened about a week following the race. I received a medal from OAR in the mail. That shadow box will have to be a bit bigger to display both of them. The Boston medal reminds me of my efforts. The OAR medal reminds me of my purpose.

OAR: Did Joseph know what you were doing? Did he have anything to say about it?

Maj. Rivera: He knew I was running. Even his teachers were talking about it because they had seen the fundraising site. I don’t think he knows how far it really was.

OAR: Tell us about your training program.

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Major Jose Rivera and his running partner and coach, Major Laura Jane Stephens, did their training runs on their Iraq base.

Maj. Rivera: It was a very focused three months with one goal in mind. Our training consisted of workouts six days a week. Two days were for weight training and a 5k run. Two days were for medium distance runs, six to eight miles. Saturdays were for long runs. We started those at six miles and increased two miles every week until we ran just over 16 miles with two weeks to go until the marathon. The long runs on Saturdays were awesome, because they were a gradual test of how far I could push myself. When we got to 16.25 miles one Saturday morning, I knew we were ready.

This is a pretty large military installation. So a whole trip around the entire base is almost 20 miles. There are plenty of main and alternate roads that you can use and get creative when selecting a route for a specific distance.

OAR: We heard that you got started with a half marathon. Tell us about that.

Maj. Rivera: The El Paso Half Marathon was another run we did here at Camp Adder. The Morale Welfare and Recreation office for the camp is always looking for activities like these races for the troops to enjoy. They also bring concerts and other different types of entertainers. What was great about El Paso Half is that it was almost at the start of my training and it was a good wake up call of what it would take for me to run 26.2 miles.

OAR: What was the toughest thing about training?

Maj. Rivera: Getting up at 4 a.m. Monday through Saturday to run and go to the gym. But I still do it. It became a routine to start my days that early.

OAR: Have you decided for sure to run the Chicago marathon?

Maj. Rivera: Absolutely! I can’t wait. I have 170 days to prepare! I think that marathon is just punishment enough to earn one of those traditional deep dish Chicago pizzas after the race.

OAR: Will you run Boston in 2011?

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HOW TO: From Janet Graetz

By Janet E. Graetz, Ph.D.

The Value of Micro-enterprise
Less “Me,” More “We”

OAR-funded researcher Janet E. Graetz, Ph.D, is an associate professor in human development and child studies at Oakland University in Rochester, MI. For the past 30 years, her life has revolved around individuals with developmental disabilities. She began classroom teaching in 1970 and taught in various schools and institutional settings until 2001, focusing on children with autism spectrum disorders during the last 15 years. She attended George Mason University in Virginia and completed her Ph.D. in special education and instructional technology in 2003. That same year, she joined the faculty at Oakland University. Her current research interests include college students with Asperger Syndrome and quality of life issues for individuals on the autism spectrum. She recently returned from India where she studied the quality of life for 13 families supporting a child with autism. 

James has a “job.” He calls it a job because it is not what he wants to do. He wants to be a rock star but has found that an impossible task and one that raises the ire of his parents.  His parents want James to work…to understand that all adults need to work…earn money…and become independent.

So far James is working, earning some money (but not much) and still does not know what it means to be independent. He continues to live at home because his meager wages do not afford him the luxury of his own place. He has a college education and a degree in history. He loves history almost as much as he loves rock music. James is very social and loves talking to other adults. His position as library custodian leaves little time to socialize with others. Every day he gets himself up, dresses, and drives himself to work.  Some days, James wonders, “Is this all there is?”

Chuck lives in the next small town. Diagnosed with Asperger Syndrome, he has difficulty in many social situations.  He graduated from high school but has been unable to find employment.  He also continues to live with his parents since he has no income. Chuck loves reading the phonebook and knows where every business is in a tri-county area. His mother depends on him when she needs to find a specific business and it pleases Chuck to help his mother.

James and Chuck both have great skills and talents. Unfortunately, when it comes to finding employment, it is like putting a round peg (our guys) into a square hole (pre-existing jobs in our society).  If James and Chuck were able to meet and join forces, then they both might find true “work” that gives them satisfaction and about which they are passionate.  James and Chuck could perhaps become “micro-entrepreneurs” and create a service or product that others may purchase.

What could James and Chuck do?  Consider this possibility: We are all busy and have too much on our “to do” list. Enter James and Chuck, who have joined forces to create a personal concierge service. The service combines the best of both young men: James’ great social skills and ability to drive and Chuck’s uncanny ability to know where every business is located. They take a course on starting a new business, create business cards, distribute them around the neighborhood, and wait for the phone to ring.

The idea behind micro-enterprise is not new. The U.S. Agency for International Development uses the concept internationally to teach impoverished individuals how to start and grow businesses. In the United States, micro-enterprise usually means a business with five or fewer employees. 

Micro-enterprise is a promising answer for many individuals with an autism spectrum disorder who, though talented, have difficulty finding and keeping employment.  Some professionals and parents think that micro-enterprises are “degrading” to individuals with disabilities who cannot make it in the corporate world. I believe that micro-enterprise ventures do not diminish the talents and skills of individuals with autism; instead, they can enhance them.

Back to James and Chuck
Long before James meets Chuck and they decide that micro-enterprise is for them, there are questions for each to examine (Sicile-Kira, C. 2009):

• What do I like to do? What are my interests?
• What do I like to do when I have free time? How much free time do I need?
• How many hours a week do I want to work? Why?
• What situations make me feel comfortable? What situations make me feel anxious?
• How many hours a day (or week) can I work? What previous work experiences have I really enjoyed?  Why?
• How well do I multitask?  How are my organization skills?
• What sensory issues may cause me difficulty in a working situation?
• What are my problem-solving abilities?

For micro-enterprises to exist, individuals with autism must find themselves in an enabling environment that facilitates their participation in the business arena. This may mean that individuals create a partnership with an existing business to assist them on their journey. For example, James and Chuck may contact a local business organization in their community and gain valuable assistance as they start their business. Mentors can provide guidance and support as new businesses begin to flourish.

Individuals with autism who are interested in starting a micro-business must answer other questions as well:

• Who are the important other individuals who can assist me in this endeavor?
• What natural supports are in place that will enable me to become a successful “micro-entrepreneur”?
• What barriers exist that may inhibit my success?
• What will be the outcome for me if my micro-enterprise company becomes successful? What will be the outcome for my family? For my friends? For my community?
• There are certain things that I am great at doing. What can be done to promote these strengths? How can they help my business?

For any micro-enterprise to be successful, it must meet the needs of others who are willing to pay for specific services. Individuals need to examine their communities to see the needs of its members. I recently explored my community and discovered that the mean age of our residents was 55 to 60, an older community that included several assisted living facilities. So, what are the needs of this community that may align to the strengths of individuals on the autism spectrum?

Since my mother had recently moved from a condominium to an assisted living facility, I was aware of one specific need: My mother had boxes and boxes of pictures and slides that had been untouched for more than 40 years. The boxes held my prom photos, slides of my high school graduation, and photos of my great grandparents on their wedding day, among others. I was overwhelmed at the thought of the time it would take to scan all the photos, including the slides. The work requires some organization but mainly a focus on detail and knowledge of the computer. I reached for the Yellow Pages to see who may already be out there to help me. I was surprised to see only two small companies listed.  That was when I realized that this might be a lucrative venture for adults with autism and could envision two or more individuals joining forces to address this need of the community (or at least for some of its members). In addition to providing income to adults with autism, it provides an opportunity for the community to meet individuals such as James and Chuck and for James and Chuck to become an integrated part of the community.

People with autism don’t need to wait until they are adults to consider the concept of micro-enterprises. High school students can start exploring micro-enterprise. Teachers can help students to identify their interests and begin the conversation regarding future employment.  New businesses can be piloted within the safety of the high school setting where students gain authentic information regarding profit and loss, business taxes, and acquiring loans for new businesses.  Districts could also pair students from different high schools as potential partners for micro-enterprises. Given access to the Internet, students may meet others and brainstorm potential business endeavors.

College students with Asperger Syndrome may also benefit from the concept of micro-enterprise. They could use the disability services office to meet other students who are also interested in micro-enterprise.  Students majoring in business could volunteer to assist their peers, providing benefits on both sides. Business students gain a chance to teach what they know and develop relationships with students with disabilities, which they may otherwise never do. As a team, the college students with Asperger Syndrome and their business partners could brainstorm about possible mini-businesses to meet the needs of college students and professors.

Micro-enterprises have provided opportunities for low-income people and others around the world. The concept is certainly worth exploring for adolescents and adults with autism, in addition to other employment possibilities. We need to expand our view of employment options and also examine potential partners who can assist.

Imagine this: After five years, James and Chuck are not only working full-time themselves at their personal concierge service, they have added five more workers to their company and expanded into surrounding communities. They each live on their own, supporting themselves and enjoying the many benefits that satisfying jobs provide.

Resources

A Market of Millions: Microenterprise Services for Entrepreneurs with Disabilities
Association for Enterprise Opportunity and The Abilities Fund (2003).
www.dvrs.state.ia.us/02-27-04-a-market-of-millions2.pdf

Blanck, P.D., Sandler, L.A., Schmeling, J.L., & Schartz, H.A. (2000). The Emerging Workforce of Entrepreneurs with Disabilities: Preliminary Study of Entrepreneurship in Iowa,  Iowa Law Review. 1691.  http://disability.law.uiowa.edu/lhpdc/publications/moreinfo/entrepIA.html

Fast, Y. (2004). Employment for Individuals with Asperger Syndrome or Non-Verbal Learning Disability. London: Jessica Kingsley Publishers.

Self-employment Technical Assistance & Training. www.start-up-usa.biz/

Sherraden, M.S., Sanders, C.K., & Sherraden, M.W. (2004). Kitchen Capitalism: Microenterprise in Low-Income Households. NY: State University of New York Press.

Sicile-Kira, C. (2009). Preparing for the real world of work. The Autism File. Retrieved from: http://www.chantalsicile-kira.com/2009/02/233-preparing-for-the-real-world-of-world

Walls, R.T., Dowler, D.T., Cordingly, K., Orslene, L.E., & Greer, J.D. (2001). Microenterprising and People with Disabilities: Strategies for Success and Failure - Statistical Data Included.  Journal of Rehabilitation, [Electronic version] http://findarticles.com/p/articles/mi_m0825/is_2_67/ai_76398486/

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FOCUS ON OAR RESEARCH

Social Skills Training for Young Adults with High-Functioning Autism Spectrum Disorders

Although some autism-related traits may be ameliorated with age, socialization knowledge and lack of interpersonal relationships continue to be two of the most prominent issues for high-functioning autistic (HFA) adults, those with Asperger Syndrome, Pervasive Developmental Disorder- Not Otherswise Specified, or autistic disorder with no intellectual disabilities. An analysis of relationships of adults with HFA revealed that only 15 to 20 percent had friendships with shared enjoyment, and even fewer adults with HFA were married. Researchers have also found that lack of social skills in young adults with HFA may lead to more isolation and thus a lack of personal and romantic relationships, vocational difficulties, and increased psychopathology. Moreover, research indicates that young adults with HFA have higher rates of depression and generalized anxiety, possibly due to higher rates of victimization, as compared to adolescents within the HFA population.

The effects of Asperger Syndrome are greatest in adolescence and young adulthood, according to research. This period encompasses school transition, finding employment, building a social network, increasing contributions to household responsibilities, greater involvement in the community, and the development of romantic relationships, all of which require a certain degree of mastery of social skills.

Social skills training has increasingly become a popular method for helping children and adolescents with HFA adapt to their social environment. However, a review of the research literature on HFA suggests that there are little to no evidence-based interventions that are specifically aimed at improving the social skills of young adults with HFA. In an OAR-funded study currently underway at UCLA, researcher Alexander Gantman, Psy.D., is testing the effectiveness of improving social functioning of transitional youth 18-23 years of age with HFA using an adapted caregiver-assisted evidence-based social skills treatment intervention.

Dr. Gantman and his team from The Help Group – UCLA Autism Research Alliance, a partnership between The Help Group and the UCLA Semel Institute for Neuroscience and Human Behavior, have two goals for the study:

• To examine the immediate change in social functioning among young adults with HFA following the implementation of a 14-week social skills intervention compared to adults in a delayed treatment control group.
• To examine the maintenance and/or change in social skills gains among young adults with HFA at a 14-week post-treatment follow-up assessment.

How The Study Will Work
Approximately 30 young adults with HFA between 18-23 years of age and their caregivers will participate in this study. Participants will primarily be recruited from graduates of the Village Glen High School at The Help Group, a specialized day school for students with high-functioning ASD, as well as other referral sources in the community. The intervention will consist of an adapted version of the 14-week PEERS program, a pre-existing evidence-based adolescent social skills training intervention developed by Elizabeth A. Laugeson, Psy.D., and Fred Frankel, Ph.D., for use with young adults with HFA. The first clinical trial of the PEERS intervention included 33 teens with ASD and revealed that teens significantly improved in their overall social skills, increased their social knowledge, and reported an improvement in friendship quality following treatment.

Instruction in social skills will include conversational skills, peer entry and exiting strategies, choosing appropriate friends, planning and implementing get-togethers with friends, handling peer rejection, and conflict resolution. The intervention will be adapted to be developmentally appropriate for the social and friendship issues common to transitional youth with HFA. The project team will add new lessons on resistance of the social/peer pressures and an introduction to dating etiquette to the existing intervention, given their developmental relevance for this population.

Based upon the success of the parent-assisted model in the PEERS program and the research evidence that suggests that transitional youth with HFA often continue to be dependent upon caregivers in early adulthood, caregivers will be included in the intervention through a caregiver-training component. Caregiver training will primarily focus on a review of the topics addressed in the young adult training sessions, as well as methods for promoting improvement in social functioning and independence. In addition, further adaptations will address the importance of transitioning young adults to independence, while providing a base of social support from caregivers.

Outcome Recommendations
Using a caregiver-assisted component: The caregiver component of the treatment model is unique and innovative in many respects. Caregiver-assisted interventions for individuals with ASD have not been widely used in previous research, and possibly not at all for young adults with HFA. By including caregivers in the treatment and enlisting them as social coaches to young adults, researchers will also be afforded a unique opportunity to address social problems specific to each young adult with HFA in the caregiver group meetings. Finally, the caregiver component will address the issues of individuation in young adults with HFA by providing parents with supportive transition into more ancillary roles, thereby increasing the independence of the young adult participants.

Using an evidence-based intervention: The use of an evidence-based strategy to address social deficits is also unique to this study. PEERS provides an evidence-based treatment core for further development and adaptation of the proposed treatment for young adults with HFA. Didactic lessons are based on previous research findings regarding ecologically valid skills (i.e., what have been shown to be successful social strategies in neurotypical peers). Topic areas are focused on social deficits known to be common among individuals with HFA.

Using a skill-based treatment with a manual: The research team expects that incorporating a manual will be beneficial in a number of ways. Previous research shows that individuals with HFA benefit from concrete presentation of didactic material. Social cognition and its context can be highly abstract concepts, which may be difficult for young adults with HFA to recognize and react to efficiently and appropriately. The proposed treatment provides these individuals with social skills via a step-by-step process for handling important social situations. Furthermore, these core social skills can be applicable to many different contexts, and as such allow for greater utilization and generalization of the skills being taught. A lesson on handling disagreements, for example, may be useful for resolving an argument with a friend, resolving a workplace issue, dealing with conflicts in a romantic relationship, or handling a dispute with family members.

Additionally, after larger clinical trials that will further support the efficacy and effectiveness of these treatment methods, the use of a program that includes a manual will allow for greater ease of training of mental health agencies/providers to offer similar highly needed clinical services for this underserved population.

Practical Relevance
The current pilot study is anticipated to have a significant impact on the transitional youth population with HFA as well as the autism research and treatment communities by addressing the social difficulties commonly seen in adults with HFA. Results from the proposed pilot study are expected to reveal a significant gain in social skills knowledge, interpersonal relationship quality, and overall social skills, as well as a decrease in loneliness for young adults with HFA. As a result, these individuals will be able to achieve a higher level of independence and functioning within social, personal, and vocational environments.

Many individuals with HFA present for treatment to address symptoms of depression and anxiety. Although the proposed treatment does not directly address these psychosocial issues, by decreasing loneliness and improving social functioning, it is likely that researchers will have a positive impact on participants’ emotional wellbeing. Having one or two close friends has been shown to have a negative correlation with anxiety and depression and can buffer the impact of stressful life events.

Not least importantly, the study provides an opportunity for effective treatment delivery to transitional youth with HFA. Arguably, this population is significantly underserved and understudied, especially in the area of treatment research. As such, this study will fill a tremendous void in the autism research literature.

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Profile: Raising LADDERS

The LADDERS (Learning and Developmental Disabilities Evaluation and Rehabilitation Services) program has had its ups and downs, says its Founding Director Margaret Bauman, MD. While it’s now hard to believe, the program, started in Boston, MA, in 1981 as a pediatric program in a geriatric hospital, was once down to four staff members, and often had to fight for attention, space, and money.

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Margaret Bauman, MD Director, LADDERS

Today, the program provides comprehensive diagnostic and therapeutic services for children, adolescents, and adults with autism and related disorders. The program sees approximately 4,000 patients annually, roughly 1,000 of whom are new patients. Between 90 and 92 percent of those seen at LADDERS fall on the autism spectrum. Under Dr. Bauman’s leadership, LADDERS now includes team expertise in the specialties of neurology, psychiatry, psychopharmacology, gastroenterology, genetics, nursing, social work, physical therapy, occupational therapy, speech therapy, developmental pediatrics, and behavioral psychology with additional specialties addressed by trusted colleagues from nearby hospitals and from the community.

Solid Ground
In 1997, LADDERS came under the umbrella of the Massachusetts General Hospital, and in the spring of 2008, moved to its current expanded location in Lexington, MA. Today, LADDERS operates under a partnership between the Department of Pediatrics of the MassGeneral Hospital for Children and the Spaulding Rehabilitation Hospital, both part of Partners Healthcare. “It has turned out to be an incredibly good marriage,” says Dr. Bauman. More recently, in the summer of 2009, Nancy Lurie Marks and the NLM Family Foundation donated $29 million to create the Lurie Family Autism Center, building on the existing clinical program at LADDERS.

Dr. Bauman points to two characteristics that she believes sets LADDERS apart from similar programs serving patients with autism spectrum disorders (ASD). “First, we are a multi-disciplinary program,” she says. “Treating autism means understanding that the disorder is more than impaired social skills, behavior, and language. Underlying medical issues often contribute to some of the developmental delays and disruptive behaviors often associated with ASD. When a child presents with a history of aggression and self-injury, we don’t automatically send that child to a behavioral psychologist or prescribe medication. We look at the whole picture. It’s possible that there may be an underlying medical condition such as a gastrointestinal (GI) difficulty that may be causing pain and discomfort that the nonverbal or hypoverbal child can’t explain or otherwise indicate.”

In a recent supplement to the journal Pediatrics, published in January 2010, a panel of experts reviewed numerous studies and reports related to GI disorders in ASD and concluded that GI conditions may play a larger role in autism than previously appreciated. “Which isn’t to say that all behavioral issues are related to gastrointestinal disorders, but it does highlight the need to look beyond behavioral symptoms and to rule out medical conditions that could be making the child uncomfortable and that may therefore be the source of the disruptive behavior,” notes Dr. Bauman.

Second, LADDERS has high expectations for the children it serves, Dr. Bauman says. “Many of the children we treat here have better cognitive skills than they previously have been given credit for. In some cases, they have been shuffled around school systems with little expectation that they can make any significant progress. However, with the advent of advanced technology and the increasing availability of various communication devices, it has become clear that many ASD children, adolescents, and adults are much more cognitively capable than previously thought. Given a communication device that they can independently operate, we have found that many ASD individuals have a good deal of knowledge about a broad range of topics.”

Moving On Up
The grant from the NLM Foundation will help LADDERS to expand its services. Perhaps most critically, in Dr. Bauman’s view, will be the expansion of adult services. “We have recently been able to add two adult neurologists and an internist to our staff who will work with our growing number of adult clients.”

“There’s a critical need to educate our medical colleagues in the adult medical world about individuals with autism,” she says. As headlines point to a growing number of children being diagnosed with ASD, there is a need to also recognize that these children will eventually grow up into adulthood. At the present time, ASD is largely perceived by the medical community as primarily a pediatric disorder. For adults with special needs, including autism, continuity of medical care is largely lacking. LADDERS will expand its program to adequately serve the growing population of teens, young adults, and their families by supporting their medical and behavioral needs and assisting with vocational training, job and college placement, social opportunities, recreation, financial planning, and fitness.

In addition to expanding service delivery to ASD individuals, the grant will also provide funding for a two-year fellowship program for the training of young physicians and investigators in the field of autism and related disorders. “We already have a strong clinical core around which we intend to wrap clinical and bench science research that will then provide a means by which clinicians and researchers can interact with each other on a daily basis. It’s critical,” Dr. Bauman emphasizes, “that research is informed by knowledge of the people who will benefit from this research and that clinicians understand the research and how it can apply to their care of the patient. Too often, clinicians and researchers tend to work in silos, uninformed by what the other is doing. A researcher can often find it difficult to fully understand the complexity and heterogeneity of the disorder if he or she has never seen an individual on the spectrum. Autism is not a one size fits all disorder.” The fellowship program will provide an opportunity for a comprehensive exposure to ASD for both the clinician and the researcher.

The future dream for LADDERS is the development of a campus which will house clinicians, clinical researchers, and basic science investigators on the same site. With staff all in one place, such a campus would encourage easy access to the exchange of information between disciplines. The availability of the gift from the NLM Family Foundation is an important first step in making this ultimate dream a reality.

The Lurie Family Autism Center will also participate in a separate multi-institutional medical training program at the Harvard Medical School, also funded by the NLM Family Foundation, aimed at educating the next generation of physicians in the modern care of patients with autism.

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