Messages

My Father's Day Gifts: Passion and Strength

By Daniel Padilla

Daniel Padilla is a nationally trained and certified housing investigator at the Illinois Department of Human Rights, which he joined after 10 years of service as a suburban police officer. He has participated in numerous leadership trainings and outreach events pertaining to fair housing. In his spare time, Padilla is a dedicated marathon runner and fundraiser for OAR and also coaches youth football, baseball, softball, and cheerleading. He recently assisted with a Special Olympics event in which his youngest son, Josh, competed. He currently resides in Northlake, Ill., with his wife, Kimberly, and his children, Nick, 19, Alyssa, 18, and Josh, 14.

Dan Padilla and his son, Josh, relax after a RUN FOR AUTISM marathon.

My son, Josh, came into this world on June 10, 1997. At the time, I had no idea how much he would affect my life. I was oblivious to the passion and strength he would give me as a parent.

At first, he seemed no different than our two older children when they were infants. We ignored the early signs of his silence, believing instead that he had inherited his mother’s shyness as a child. His sister would do everything for him and we thought that perhaps he was just getting used to that.

Then, at age two, Joshua’s doctor began to question his development. My wife and I continued to be in denial, even when he was three and the doctor suggested speech therapy. As long as my wife and I understood what he wanted, we figured that our son was okay. Eventually, we did take Josh to speech therapy but did not see much improvement.

Later, the doctor suggested we take Josh to see a neurologist. Confused and desperate for direction because Josh was her first child, my wife agreed to go. I still felt no need to go, hopeful that all would work out and that there was nothing wrong with Josh.

When my wife returned from the neurologist, she said they had only been with the doctor for a few minutes when he informed her that Josh had autism. I took the news about the diagnosis like any other medical condition. I figured there would be a cure or, at the very least, a pill that would make it all go away.

Changing for the Better
I quickly learned that there is no cure for autism. I began to question how and why this had happened. Where was it that we went wrong? We were told that there was no medical reason or explanation for autism. Frustration set in and my whole world changed.

In the years since, my world has continued to change but for the better in so many ways. Next year, Josh will bean incoming freshman in high school. School has been awesome for Josh, and he has developed into an inspirational teenager who is ready for this new step. To graduate from 8th grade, he had to give a speech. With all of the growth we have seen in his personal life, it should not have surprised me to see how well he did.

I have requested that Josh become a member of the high school football team. I am realistic enough to know that he is not likely to ever play on the field, but I think it is important for him to be part of a team. And part of my mission is to educate the young men on the football team about autism, an awareness I hope will spread through other students at the school as well.

As Josh has grown and his mother and I have continued to learn about autism, I have discovered an autism community that is small, but strong and caring. I found support all around me. Several people in my life have been affected by autism. The son of one of my high school friends was diagnosed with autism. In a conversation with him, we both remarked that we felt like we were the lucky parents. Our challenges are exciting and unlike the “normal” problems or issues facing all other teenage children.

Running for Hope
I have to be honest. My initial intentions for running the Chicago Marathon were solely selfish. I wanted to challenge myself and the Chicago Marathon was the ultimate challenge. Not knowing how hugely popular the marathon was, I was in no hurry to sign up and had no idea it would sell out. When I signed up for my first marathon three years ago, I picked the anniversary date of my mother’s passing in late April. I figured it couldn’t hurt to ask my mom for some heavenly assistance in training and running. Of course, by then, the Chicago Marathon was closed. I felt defeated before I’d even started.

Scanning through the Web site, I learned that it was still possible to sign up if I did so through a charity. Since my mother had passed from lung cancer, I chose the American Lung Association. But as I completed the application, sad memories kept coming up so I began to scroll through the list of charities again.

That’s when I saw OAR. I think my mom was pointing me to OAR, wanting me to run for my son -- for hope. I signed up. I started letting people know that I would be running the marathon, and I received a huge amount of support from my family and friends. When they found out that the reason I was running was for Josh, the outpouring of support turned into a flood.

During my training for the first marathon, I thought there would be no chance of me doing a second marathon. OAR asked me to give a speech at its Runner Appreciation Dinner the night before the big day. I agreed thinking that I had nothing to lose since I’d never be doing this again.

Marathon day came. It took me some time to complete the 26 miles, and as I took my last two steps to the finish line, the only thing that came to my mind was the desire to do this run again. It had nothing to do with bettering my time but had everything to do with the reason why I run. In thinking about OAR’s support for their runners and the way its funds are used to support autism research, I felt I had to run again.

By my third marathon, I was beginning to think that running the Chicago Marathon to benefit OAR was more of an addiction. Now, however, I realize that my reason for running is based in a desire for a better future for my son and to further the work of OAR. I am a firsthand witness to the amount of dedication that educators and OAR have for individuals with autism and their families. What I have is not an addiction. Rather, it is a deep-seated passion that has transformed me into a marathon runner for hope.

What I’m Grateful For on Father’s Day…and Every Day

By Major Mark E. Huhtanen

Army Major Mark Huhtanen is now on his third deployment in Iraq. Before he left in May, he wrote this column contemplating his role as father and soldier. A veteran of Operation Iraqi Freedom, he has served as an infantryman for 15 years, assigned to various units, including light infantry, airborne, and mechanized, in the United States and overseas. He holds master’s degrees from Webster’s University and the School of Advanced Military Sciences. Huhtanen is married to the former Shelly Worley, a columnist and advocate for people with autism. (Shelly also wrote an article for this issue of The OARacle, reprinted from Exceptional Parent Magazine.) They live in Fort Hood, Texas, with their two sons, Hayden, six, and Broden, five.

With Father’s Day just around the corner, it only seems fitting that I write to you on the eve of my third deployment. I am sitting here contemplating what I will miss when I leave my wife and children for a year. I will miss their birthdays and the first day of school. I will miss my son, Hayden, fighting with his mother because he does not want to wear a collared shirt for church.

Broden Huhtanen and his dad, Mark, enjoy some down time.

There are so many things to miss. My biggest fear is I will miss so many firsts with my son, Broden, who has autism. Will he miss me? I know he could not tell me, but was he thinking it?

There will be life-changing experiences that I will not be around to see and will only see through pictures my wife will send me while I’m away.

Before becoming a father, I always thought Father’s Day was just a holiday dedicated to dads. We bought them crazy ties or those gadgets for their garages they may use once a month. As I looked forward to celebrating my own Father’s Day, however, I realized this day had become a time to reflect on my family and what I have done for them. This year I find myself thinking of my role in my marriage and what it is like to be a soldier and a father.

On this Father’s Day, I will have been deployed for a month and if I am lucky, I will get to see my family for a few minutes on Skype. Deployment will give me a day to truly reflect. By now, life at my house will have adapted to my deployment. My beautiful wife will be driving to and from school, ABA clinic, additional therapies, and activities with the precision a soldier gives to a well-coordinated attack.

My “Battle Buddy”
My wife is the core of our family, holding it together in my absence. After 15 years of service and many deployments, I can move 800 soldiers faster than I can move my own family. My wife, on the other hand, can pack up our belongings and get us where we need to go time after time after time.

She is my first thought as Father’s Day approaches and I give thanks for my lifelong “battle buddy,” my wife. I don’t think I thank her enough for taking care of our kids and enduring our chaotic life. She makes it look so easy. I think of what Shelly is doing right now, and I know that I truly could not be where I am without her.

Next, I ask myself, “What is my role?” How can I help my wife while I am gone? The answers are much simpler to state then execute. First, my role is to be Shelly’s wingman and support her. In our family, that role equates to dealing with the bureaucracy of the service and Tricare. I try to handle the paperwork, wait for responses to inquiries, and make the numerous phone calls to military programs to ensure we utilize every service the Army has to provide. Second, I listen to her. My wife is going to giggle when she reads this, because I can be a terrible listener. Many times she will say, “I don’t want you to fix it! Just listen to me!”

Mothers deal with a lot. As fathers, believe it or not, we get a break when we go to work, the field, or deploy. I remember one weekend I watched the boys while she went on a short trip to visit her brother. It was after my second deployment, and all I could think of was how much easier running a combat patrol was than getting two children through the weekend. That may sound crazy, I know, but it made me realize that our families are constantly fighting on multiple fronts. There is the battlefield overseas and there is the stress of having a special needs child, the bureaucracy of the health care system, and finally doing it all over again every time we deploy, move to a new station, or transition.

Today, I realize Father’s Day is a day for me to be thankful for what I have in my lifelong battle buddy. The role she plays in our family is even more important given that one of our children has autism, a heavy rucksack for any parent, and particularly for a military parent.

So, even though I am a thousand miles away, I still thank her daily. I thank her for what she does and her sacrifices. To all the moms with special needs children, thank you!  There is definitely no way we could do what we do without you. You are not only not forgotten, you are celebrated, even on a day dedicated to dads!

Top

Perspectives

From the Beginning: Reflections from the OAR "Family"

As OAR celebrates its 10th anniversary year, we are aware just what it takes to make us the organization we are today. We are surrounded and supported by legions of people who have helped us. We present these perspectives to give you an idea of what OAR represents.

Joanne Gerenser, PhD, CCC-SLP, executive director of the Eden II Programs in Staten Island, N.Y., has been a member of OAR’s Scientific Council since it and OAR began 10 years ago. Invited by Scientific Council Chair Peter Gerhardt, Ed.D., Dr. Gerenser, who is also an adjunct associate professor in the PhD Program in Speech-Language-Hearing Sciences at Brooklyn College and a member of the faculty of the Penn State Professional Development Certificate Program in Autism, was happy “to be part of something that I knew would have a very positive impact on the field of autism and those living with autism.”

Today, she sees that impact in the research OAR has funded. “OAR has funded research in so many critical areas that have had a direct impact on individuals with autism and their families. For example, there has been research funded by OAR and published on issues such as sleep problems, promoting joint attention in young children, as well as evaluating the efficacy of current interventions. The results of these studies have significant impact on individuals with autism and their families right now.”

Beyond research, Dr. Gerenser also notes OAR’s practical nature. “In addition to the great applied research that has been funded, OAR has published some incredible guides for families and practitioners. What is most important is that it is the mission of OAR to get these guides into the hands of those who need them and do so by giving them away for free. OAR supports graduate students in the form of small grants. What a great way to help develop the next generation of applied researchers in the field of autism. OAR also provides scholarships to individuals on the spectrum attending college. Another great idea with incredible practical implications.”

Dr. Gerenser has done more for OAR than contribute her expertise and experience to OAR. She’s run her way through several RUN FOR AUTISM events, including the Marine Corps 10K several times and the Marine Corps Marathon and NYC Half Marathon. “I love these events as they bring some incredible people together from all over the country. Most of the runners are parents or family members who have a child with autism. In some cases, however, they are just runners who were so inspired by the work of OAR that they have made this their cause to run for.”

Top

Salute

OAR-Funded Researcher Keeps Girls in Focus

Boys are four to five times more likely than girls to have autism so it makes sense that our idea of what autism looks like is based on a male prototype. But it is important, notes OAR-funded researcher Shana Nichols, Ph.D., author of Girls Growing Up on the Autism Spectrum: What Parents and Professionals Should Know About the Pre-Teen and Teenage Years, that we not lose sight of girls and their struggles, as well as that of their families.

.

OAR-funded researcher Shana Nichols specializes in researching and writing about the experiences of girls on the autism spectrum.

“The female profile of autism is a little different,” she explains. “A lot of girls with autism get diagnosed later if they get diagnosed at all and then they struggle with what autism looks like for girls.” That struggle is compounded by the societal stereotype of women as nurturing and caring. “Being understood when you are a girl growing up with autism is a challenge. We’re making progress but we have a long way to go.”

A licensed psychologist for five years, Dr. Nichols has worked in the autism field for 15, beginning as a home-based ABA therapist when she was an undergraduate majoring in psychology. “I answered an ad from parents who needed someone to work with their preschooler.” From that job on, Dr. Nichols says she loved working with kids with autism, figuring out how to connect with and understand them. “I really enjoyed working closely with families in their homes. It put me on the front line and I could see the progress as the kids improved their thinking and language skills.”

For years, her work was with boys. “I got all the way through graduate school and training, having met only a few girls with autism spectrum disorders (ASD).” That changed when she went to JFK Partners in Denver, Colorado for her internship. “I was working with girls who had dual diagnoses that potentially included ASD.” She realized then that girls and their families didn’t have the support they needed so she started a group for them. “They were so happy to connect with others. Many of the girls and their families felt isolated.” When she moved to New York, where today she is the owner and director of ASPIRE Center for Learning and Development, in Melville, she continued to offer group programming for girls.

Positive, Proactive, and Prepared
By that time, Dr. Nichols had moved from working with preschoolers to mostly working with adolescents. She laughs as she says, “I really enjoy a challenge.” More seriously, she observes that while there is a lot more understanding of what adolescents with autism experience as they move into adulthood, it’s still an understudied area for researchers and clinicians. In her work, she has delighted in seeing teens learn about themselves as they grow and develop.

She spends much of her time helping parents as well as young people. For the parents of girls, she emphasizes the three Ps—being positive proactive, and prepared. “Adolescence is a challenging time for girls as their bodies change in such major ways.” Parents can help by preparing girls ahead of time for the changes to come, she says. “Talk about the changes and tell them that there’s no reason to be afraid of them. Get your daughter used to what will happen by, for example, buying a bra she can practice wearing before she actually needs it.” The goal is to make transitions as smooth and non-frightening as you can, she explains.

One of the biggest challenges for girls on the spectrum is social. “When girls move into middle school, they face a far more complex social world than in elementary school. Making friends is based on social hierarchies and conversation. For a lot of girls with ASD who had been able to make friends when they were younger, getting thrown into that social environment overwhelms them.” Parents can help, Dr. Nichols advises, by working on social skills before the girls move into middle school.

A New Aspiration
Dr. Nichols opened the ASPIRE Center for Learning and Development a year ago. “It’s very exciting to head a program. Our goal is to become a state-of-the-art outpatient diagnosis and treatment program for families to come for services that are evidence-based.” The center offers clinical services to individuals with ASD and other social learning disorders from infancy to adulthood, working with them and their families on issues related to anxiety, mood disorders, disruptive behavior disorders, learning disabilities, and cognitive impairments.

She found the perfect place to offer these services, she says. “It’s a residential farmhouse that we converted into a clinic. The rooms are homey and comfortable and give off a very different vibe than an office or hospital setting.” There’s even a clinic cat, Raj, who came with the property and has proved to be a great addition to the staff, notes Dr. Nichols. “The kids love him and we use him as a reward.”

Dr. Nichols also continues her research and writing. Currently, she and her ASPIRE team are creating a database from the assessments they conduct at the clinic to build profiles of girls on the spectrum. “When that’s done, we can conduct studies using the database for information.”

Another project in the works is a healthy lifestyles curriculum for teens on the spectrum. “The benefits of a healthy lifestyle for teens on the spectrum is another area that hasn’t been studied much,” she notes. “But it’s important for all teens and young adults, including those with ASD, to exercise, sleep and eat well, and cut down on their stress.”

And she has two books in the works, in addition to a recently published set she co-authored with three other OAR-funded researchers (see sidebar). “One book is going to be a companion to the Girls Growing Up book meant for the girls themselves.” She’s working with a college student who has Asperger Syndrome, Brigid Rankowski, on that guide, which includes advice from women and girls on the spectrum. The second book, a collaboration with Samara Pulver Tetenbaum, PhD, a post-doctoral fellow on the ASPIRE staff, is about the precursor skills needed to take part in cognitive behavioral therapy. “Samara is an OAR-funded researcher as well. She received a graduate student grant for her dissertation research from OAR.”

There is much to be hopeful about for children and adolescents on the spectrum, as far as Dr. Nichols is concerned. She is also aware that we as a society have much to prepare for, as more and more of those adolescents move into adulthood, looking for independence, good work, and the same quality of life their typically developing peers enjoy. Taking a page from her book on girls, we should be positive, proactive, and prepared as a society to support those young people, men and women.

Top

OAR News

Nine Graduate Researchers Receive OAR Funding

OAR is pleased to announce the results of its eighth annual Graduate Research Grant Competition. Open to graduate students pursuing master’s or doctoral degrees, this competition awards up to $1,000 and $2,000 respectively to those conducting research related to autism spectrum disorders. This year, OAR will make nine awards to doctoral students, totaling $18,000.

With these grants, OAR has awarded a total of $126,000 in research grants to 68 graduate researchers since the inaugural competition in 2004.

OAR received 15 research proposals this year, utilizing a new online application system. Two members of OAR’s Scientific Council reviewed and scored each proposal. The reviewers’ task was to identify the studies that best matched OAR’s research priorities and whose potential outcomes were most relevant for families. In keeping with OAR’s dedication to quality research, only the best of the best were selected for funding.

This year, OAR is also proud to provide its first grant to an applicant from Australia, Song Ha Vu. The only previous international graduate grant was to Kerry Dos Santos, a student from South Africa in 2007.

The 2011 grant recipients are:

Aimee Giles, West Virginia University
Comparison of Two Teaching Procedures on Generalization Across Settings and Time

Angela Bourne, Texas Tech University
An Integrative Approach to the Design of Independent Living Environments for Adults with Autism

Jennifer Sarrett, Emory University
Global Experiences of Autism: Looking at Cultural Influences of Autism in America and India

Kaitlyn Wilson, University of North Carolina
Teaching Communication Skills to Preschoolers with Autism: Video vs. Live Modeling in the Classroom

Lauren Kryzak, City University of New York Graduate Center
The Effects of Support and Training on Reciprocal Social Interactions between Siblings

Lillian M. Christon, Virginia Commonwealth University
Coordination of Care and Treatment Practices in Professionals Working with Children with Autism

Marcil Boucher, University of Massachusetts
Evaluation of Motor Speech Impairments and Treatment Planning for Individuals with Autism

Rachel E. Aiello, University of Kentucky
Intelligence Test Scores and Test Session Behavior in Children with Autism Spectrum Disorders

Song Ha Vu, University of Queensland (Australia)
Using Participatory Action Research to Understand Autism Spectrum Disorders within the Socio-Cultural Context of Vietnam

For information on the 2012 Graduate Research Grants Program, please visit OAR’s Web site or contact Alyssa Kruszyna, director, business operations and communications, at 703-243-9717 or akruszyna@researchautism.org.

Vice Chairwoman Gathers OAR Supporters for a Fine Evening

When Lori Lapin Jones became OAR’s vice chairwoman last October, she immediately began thinking about hosting a fundraising event on Long Island, N.Y., where she resides. It wasn’t long before thought turned to action. On May 10, she hosted the OAR Vice Chairwoman’s Reception, an evening of inspiration and celebration. It also happened to be the first OAR event ever held on Long Island.

Close to 100 people, including members of Lapin Jones’ family, friends, professional colleagues, and members of OAR’s Board of Directors and Scientific Council, joined Lapin Jones for drinks and dinner at Table 9 Restaurant in East Hills. In the process, they helped OAR raise more than $17,000.

Amazed and humbled by the turnout, she told attendees, “I was hoping to have at least 30 people. Then we hit 30, then 40, and the number kept rising until tonight! Thank you.” In subsequent remarks, she recognized family, described the challenges autism presents, and explained why OAR and its work are both important and meaningful.

Lapin Jones and the Table 9 staff had everything planned down to the last detail, or so she thought. Before introducing Lapin Jones to speak, OAR Executive Director, Mike Maloney, deviated from the script as the suspicious host looked on.

Removing a purple Texas Christian University (TCU) hat and TCU’s version of the Terrible Towel, Maloney explained that they had been sent to OAR from one of OAR’s scholarship recipients, a young woman with autism attending TCU, whose sports teams are known as Horned Frogs.

Presenting them to Lapin Jones, who chaired the Scholarship Committee for its first three years, Maloney read aloud the note from the student attached to the items, “Dear OAR, Thank you for making me a Frog!”

The hat, towel, and note are now prominently displayed in Lapin Jones’ law office and serve as a daily reminder of the evening, the TCU student, and the significant work that OAR does.

Chairman’s Dinner Marks a Milestone and Breaks Records

On June 6, OAR Chairman Jim Sack hosted his 10th annual Chairman’s Dinner. Family, friends, and business associates turned out in droves to mark this milestone.

Since 2002, Sack has held his dinner to raise money for autism research. This year was not only a milestone, it was a recordbreaker, surpassing previous attendance and fundraising totals. Over 160 people filled The Palm restaurant in Tyson’s Corner, Va., to enjoy an evening of great food, wine, and socializing. The happy crowd also shattered the previous fundraising record, surpassing $100,000.

As always, the dinner culminated in a live auction with none other than Jim Sack as auctioneer. With rare and unique items, such as a trip to a live beehive, a barbeque feast for 20, and having a caricature featured on the wall of The Palm, the auction was a guaranteed success.

“I am constantly amazed at the generosity of my friends and colleagues,” says Sack. “This is the first time we’ve broken the $100,000 mark, and it just sets the bar higher for next year.”

With this year’s success, the Chairman’s Dinner has now raised more than $700,000 for OAR and autism research since 2002. All proceeds from this event support OAR’s research and autism information programs.

The Interns Have Arrived

Each summer, a group of interns joins OAR. When they leave at the end of their terms, they leave behind contributions that range from new publications to updated websites to more efficient operating methods. This year, three undergraduates, Jayne Blumenthal, Nichole Holladay, and Michelle Kuhn, are working away on their summer projects.

Blumenthal is completing summaries for all of the studies that OAR has funded so the general public can access and use the findings. She is also revising OAR’s informational and donor brochures.

Holladay is working on an informational publication about autism for children, one that is, she says, “easily understood but also teaches the children new terms and information to which they have not been previously introduced.”

Kuhn is working on the next Life Journey through Autism guidebook, one begun by Allison Gilmour, director of programs and community outreach, for parents who will need to navigate the special education system.

Blumenthal and Holladay will be seniors in the fall. Holladay is majoring in history and educational studies at Colgate University in Hamilton, N.Y., and Blumenthal attends George Washington University, in Washington, D.C., where she is a pre-med student studying public health. Kuhn is also at George Washington where she will be a junior in the fall, majoring in psychology with a concentration in developmental psychology.

Kuhn feels lucky to be working in an organization with a mission that so closely dovetails with her interests. “I am interested in finding ways to apply what researchers have discovered about psychological differences that emerge in childhood, and autism is a field that has been receiving extensive attention recently. Working here has already exposed me to a whole host of studies and resources that are out there for individuals on the spectrum and their families.”

Blumenthal’s connection is personal. “My good friend's brother has autism so this allowed me to work for a non-profit that provided help to a cause I am interested in and wanted to learn more about.” She’s also glad to get an inside look at nonprofit operations and management.

For Holladay, working at OAR has proven to be a balance of focused, goal-oriented work and freedom to research topics within studies on autism that she has an interest in. “I am learning a great deal of information from the research for my projects while still working towards a final product that I can be proud of.”

OAR welcomes undergraduate and graduate students for its intern program. Details and information about the program are available on OAR’s Web site.

Top

How-To

By Shelly L. Huhtanen

Play With Me

Shelly Huhtanen originally wrote this column for Exceptional Parent Magazine as part of its Military section in its April 2011 issue. She is a columnist and advocate for people with autism as well as an active-duty military wife and mother to two sons, Hayden, 6, and Broden, 5. Her husband, Mark, is a major in the Army and recently left on his third deployment in Iraq (You can read his Father’s Day Message in this issue.) The family lives in Fort Hood, Texas.

Children with autism find it difficult to socialize with their peers and many of our children with autism lack appropriate play skills. The ability for our children to play is important because it can develop language and encourage imagination. Play can also lessen our children’s isolation and create opportunities to interact with their peers. Children often connect through play and having similar likes and dislikes. My typical child, Hayden, will identify friends by what they like to play with and talk about on the playground. I’ll find myself associating his friends with the connections they have with my son. I remember Hayden running up to a boy on Halloween and asking to take a picture with him because he had on an Iron Man costume, just like Hayden’s costume. He did not know this boy, but there was an instant connection due to them liking the same things.

Lately, Hayden and I have been talking a lot about Broden’s autism because he has been bringing up some great questions. In return, I’ve tried to ask some questions of Hayden to encourage him to describe his feelings about Broden’s autism and to find ways to create situations where they can connect. I asked Hayden the other day, “What do you not like about Broden?” Hayden was very quick to answer. He said, “I don’t like Broden because he doesn’t like to play with the same things that I like to play with.” Broden is only 20 months younger than Hayden. Hayden knows Broden is going to be 5 years old soon and he remembers very distinctly what he played with when he was that age. Hayden said, “Mom, I played with GI Joe and Star Wars. Broden doesn’t like that stuff.” A light went on in my head.

I spoke with Broden’s board-certified behavior analyst (BCBA) and relayed to her the discussion I had with Hayden. I asked her if there was any way that we could take a look at the toys we were teaching Broden to play with at his Applied Behavior Analysis (ABA) clinic. Instead of teaching Broden to play with a barn or an alphabet game, we decided to create our own list of toys for Broden to learn to play with and ask Hayden for help. With Hayden’s help, we could assure that Broden would learn to play with toys that Hayden would like and this, in turn, would help Hayden feel included.

Once Hayden and I sat down together, we started to talk about all the things that Broden should try. One thing on the list was teaching Broden how to play a Wii game. Hayden said, “Broden just watches me play Wii. It would be fun to be able to play a game with Broden.” What was so wonderful about this process was that I realized that we were not only going to be creating new and exciting experiences for Broden, but also providing connections for our two boys.

Last week was the first week of implementing our new approach to play. Broden brings his own bag of toys to clinic and we plan to add new toys to his toy bag once he masters his first bag of toys. There may be toys that Broden has no interest in, but the hope is that there might be a few things that may connect Hayden and Broden. I caught a glimpse of it this weekend when Broden grabbed a foam sword out of his bedroom. A few minutes later, Hayden picked it up and started to play with it. I thought, “Ah! Both of them seemed interested in the same toy.” I acknowledged this as a step in the right direction. It may be a small step, but in the world of autism, we’ll accept any type of step as long as it is in the right direction.

Being in the military, there are many programs available to give your children with autism opportunities to try new things and to create situations where your child can socialize and play with other children. Remember that each experience is allowing your child to grow. At Fort Hood, Texas, the Exceptional Family Program (EFMP) has a program called the Sea Dragons. This program allows families with special needs children to swim together. They create a safe and welcoming environment for families that may not be available at a public pool. Programs like the Sea Dragons are provided at military installations to ensure families with special needs have opportunities to grow. I encourage you to reach out to your EFMP at your installation to see what is provided in your area.

Again, appropriate play for children with autism can be quite difficult to achieve, but there are ways to tackle this obstacle. If your child with autism has siblings, ask for their help. Make this a team effort so you can allow the entire family to feel connected to their sibling with autism. In many ways, if the siblings are a part of the process, they may be more inclined to ensure their sibling with autism succeeds because if their sibling with autism succeeds, then they have as well. They will remember that there is more hope with every small victory.

This article was reprinted with permission from Exceptional Parent and EP Global Communications, Inc., all rights reserved. You can find out more about Exceptional Parent at www.eparent.com.

Top

Applying Research

What Contributes to Student Success in Inclusive Settings?

A recent study in the United Kingdom examined factors in public schools that make inclusion successful for secondary students with autism spectrum disorders (ASD). Researchers polled parents and teachers and examined school statistics to compare changes in social behavior, emotional and behavioral problems, and sense of school belonging over one school year to school size, teacher training, use of classroom assistants, and number of other students with disabilities in the school. While some of the results were as expected, others were slightly surprising. The findings include:

• Students with ASD had increases in social behavior when educated with typical peers.
• When educated with other students with disabilities, students with ASD had better emotional and behavioral outcomes.
• Students with assistants had fewer behavioral and emotional problems. Conversely, having an assistant significantly impeded social behavior.
• Teachers with more training positively impacted students with ASD by reducing social behavior problems and increasing sense of school belonging.
• Larger schools and classrooms decreased social and emotional problems. Schools with higher numbers of students with disabilities saw increases in feelings of belonging for students with ASD but decreased social behavior.

The authors point out that social behavior is extremely important as a predictor of school and work success and parents and teachers should consider this when choosing inclusive classrooms and deciding to use a classroom assistant. This study is important as many parents chose to move their children to schools specifically for students with autism. While these schools may produce better outcomes for behavior and functional skills, they may negatively impact social behavior.

Reference

Osborne, Lisa A. and Phil Reed. (2011). School factors associated with mainstream progress in secondary education for included pupils with Autism Spectrum Disorders. Research in Autism Spectrum Disorders. 5(3). 1253-1263.

Top

Research 2011

A Closer Look at 2010 OAR-Funded Research

Study: Increasing Independence and Task Completion in Adolescents and Adults with Autism Using Independent Work Systems

Research Sponsor: This study is funded entirely by money raised by Team Running for OAR by the Shore, a group of parents, teachers, and the community of Leer North Elementary School, North Ridgeville, OH, as part of OAR’s RUN FOR AUTISM-Cleveland team in 2009 and 2010.

Researcher: Kara Hume, Ph.D.

Purpose: The proposed research will extend the use of work systems, an evidence-based practice with school-aged children that provides visual information about what one is expected to do, to adolescents and adults with autism spectrum disorders (ASD).

Why Is This Study Needed?
Individuals with autism often have difficulty completing tasks or a series of tasks independent of staff support. This reliance on staff presence or prompting has likely contributed to the dismal employment rate for individuals with autism, as well as to a number of poor outcomes that adolescents and adults with autism have reported (e.g. reliance on adult support in school settings, inability to live independently). Though a number of interventions are proven to increase independent functioning, few have been established as effective with older individuals with autism, and fewer still in natural settings, such as schools or job sites.

The study is expected to yield valuable information to caregivers and service providers regarding the efficacy of independent work systems for individuals with autism. While there are many intervention approaches that have been shown to be quite effective at promoting skill acquisition, fewer interventions also take into account the development of independent functioning or do so too late after patterns of learning and responding are fixed. This study will focus on this critical skill and should encourage those in the field to focus on the development of independent performance throughout the stages of learning (i.e. acquisition, fluency building, and generalization).

Study Methodology In Brief
The two proposed studies will be conducted at various school and employment sites throughout North Carolina and will include six individuals (three adolescents and three adults) with autism ages 15 and up. The studies will examine the impacts of work system usage across settings on on-task behavior, accurate task completion, and levels of adult prompting. In addition, data related to task complexity will be explored.

Work systems, visual information informing an individual what to do while in a work area, use an alternative stimulus to provide support for individuals with ASD. A work system is different than a visual schedule, as a visual schedule indicates where an individual is to go, while a work system answers questions about what is to be done once an individual has arrived at a scheduled location. Work systems attempt to provide individuals with ASD with a meaningful and organized strategy to help them start and complete a number of tasks or activities. Information in a work system is presented visually to individuals based on the developmental level of the individual, and can range from pictures or objects for those who are more concrete learners to written lists for individuals with strong reading and comprehension skills.

One study will work with three adolescents with autism, ages 15 to 18, while the second study will work with three adults with autism, age 19 or older.

Research staff will determine specific tasks/activities that each individual has previously been taught and has mastered, yet is not able to demonstrate independently (i.e. an adult must stay nearby for activity to be completed, but does not have to provide instruction on how to complete an activity). Examples include completing work independently in academic courses, completing a series of functional tasks in an employment setting, or completing homework assignments in a study hall period.

The study will employ three phases for each participant: baseline, training, and use of individual work systems. In the baseline phase, the individuals will be observed during the selected activities/tasks.

In the training phase, members of the research team will teach the individuals how to use their work systems. Materials will be similar but not identical to those used during the identified tasks. For example, if the identified series of tasks are related to a mail clerking job, the work system may be taught using mastered tasks related to another activity such as making lunch or participating in leisure activities.

During intervention sessions, all work system components will be used during the identified tasks/activities. Data will be collected related to time on-task and adult prompting, and task completion data will be collected during the activity as each step of the task is/is not completed and completed accurately.

One month after the training is completed, the research team will conduct a follow-up session to assess whether behavior change was maintained with the use of the individual work system.

Researcher
Kara Hume, Ph.D., will serve as the principal investigator for the proposed project. She is an investigator at Frank Porter Graham Child Development Institute at University of North Carolina, Chapel Hill. She is currently working on a federal grant project funded to evaluate the efficacy of behavioral interventions for children with autism. Dr. Hume has worked as a classroom teacher, TEACCH trainer and consultant, and a home program therapist. She has conducted previous research on work systems with children with ASD, including an OAR-funded Graduate Research grant in 2004 and has published the results in various peer-reviewed journals. Dr. Hume has the distinction of being the first researcher to receive OAR research grants as a graduate student then later as an applicant in the Applied Research Competition.

Top

News from the RUN FOR AUTISM

We Have the Perfect End-of-Summer “Runcation”

If your idea of a fun half marathon involves sun, sand, and rock and roll, OAR has the race for you! The Labor Day weekend (September 3-5) Dodge Rock ‘n’ Roll Virginia Beach Half Marathon promises minimal racecourse-to-beach time. Get ready to take those speedy feet for a refreshing dip in the Atlantic Ocean!

Along with the customary band-at-every-mile and race weekend concert that Rock 'n' Roll races offer, the Virginia Beach Half Marathon treats runners to a fun, flat course that winds through one of America's best beach towns. After a tour of the beach neighborhoods and a jaunt through Camp Pendleton, runners will kick in the final mile along the Virginia Beach boardwalk. Surf’s up!

Ready to run, walk, or rock out on September 4? Runners who commit to fundraising $600 will receive a complimentary entry into the race.

Already booked your runcation and registered for the race? Join the RUN FOR AUTISM team by committing to a $250 fundraising minimum.

RUN FOR AUTISM’s Rock ‘n’ Roll Virginia Beach Half Marathoners receive OAR gear, fundraising and training support, race-day support in Charity Village, and a finish-line beach party.

E-mail Chelsea Steed at run@researchautism.org to join the team today!

They Ran, Rocked, Rode, and Raised Money in the Fifth Annual Chloë K 5K

Runners? Check. Walkers? Check. Motorcyclists? Check. Record numbers? Check!

On Saturday May 21, the 5th Annual Chloë K 5K RUN ROCK RIDE for Autism took over the streets of Rensselaer, Ind. This was the most successful Chloë K 5K to date with over 300 participants and many more volunteers, staff, and spectators. Together, this crew raised more than $13,500 for autism research, bringing the five-year total for the Chloë K 5K to more than $50,000.

.

Susie Rayburn and her daughter, Chloë, look on as participants in the fifth annual Chloë K 5K RUN ROCK RIDE for Autism pass by.

OAR cannot thank soon-to-be ING New York City Marathon finisher Jeff Rayburn and Chloë K 5K Race Director Susie Rayburn enough for all that they have done for OAR and autism research. They organize the event every year in honor of their 14-year-old daughter, Chloë.

In a race day interview with local news channel WFLI, Susie confessed that she never expected the race to grow this fast. "When we had 95 people or so, we were thrilled just to have that many because it was quite a crew then. We have people from all over. Someone came from Ohio today. I don't know how she heard about it," said Susie. (See the interview as well as video of the event.)

The day began with Jeff wishing everyone a safe and speedy race. Volunteers at the school where the race began and ended worked tirelessly, handing out race shirts, refreshments, OAR tattoos, and water bottles from the Jasper County Health Department.

The course featured live music along the route, including Zach Rayburn, Chloë’s brother, and his band; two guitarists; a barbershop quartet; and a few members of the Tri-County High School band.

Some of Rensselaer’s speediest runners took to the course. RUN FOR AUTISM alum Craig Hooker took the lead early in the race. But refusing to give up and give in, local cross-country star Ryan Harrington overtook Hooker and crossed the finish line first. John Urbano wasn’t far behind Harrington in second place, followed by Hooker in third.

RUN FOR AUTISM-Cleveland Celebrated a Rockin’ Good Weekend

Cleveland rocks! So does the RUN FOR AUTISM-Cleveland team. On May 14, OAR was proud to be the presenting charity at the Rite Aid Cleveland 5K and have a large presence in Sunday’s 10K and half and full marathons.

An OAR team of 207 runners took to the streets of Cleveland for Saturday’s 5K, celebrating their finish on the Brown’s Stadium field by the Dawg Pound. On Sunday, 37 RUN FOR AUTISM participants took on the challenge of the 10K, half and full marathons, weaving their way through some of the most popular suburbs in Cleveland. Cold, wet weather blowing in off of Lake Erie the whole weekend did not deter the fierce OAR runners and their awesome supporters.

All together, the RUN FOR AUTISM-Cleveland teams raised $15,684. Christian Heller and the dynamic father-daughter duo of Mike Kelley and Megan Buckland topped the fundraising list.

Heller is a devoted OAR supporter, going above and beyond with his fundraising and recruiting help in Cleveland. Having run his first OAR 5K in 2010, Heller chose Cleveland’s 2011 race weekend to complete his first half marathon, raising a total of $2,130. He is now in the process of training for the Chicago Marathon this October.

Kelley and Buckland took on the 5K together, cheering each other on throughout the whole race. Kelley turned around the next day and participated in the half-marathon. Together, the dynamite duo raised $1,600.

Previous “OAR by the Shore” teammates, Gretchen Herzberger, Jamie Maasen, and Jodi Qualkinbush, took the prize for most team spirit. The women sported fantastic “faces of autism” capes and puzzle-piece hair ribbons. They also brought their beloved canine friends to join the RUN FOR AUTISM team. The two pups wore RUN singlets and greeted the OAR runners at our charity village tent with congratulatory woofs.

Missed this year’s Rite Aid Cleveland races? Fret not! OAR will once again be the presenting charity at the 2012 Rite Aid Cleveland 5K and will also have a team participating in the races on Sunday. Stay posted for upcoming details.

The RUN FOR AUTISM-Pittsburgh Team Is Tough as Steel

OAR’s RUN FOR AUTISM—Pittsburgh team proved that the ’Burgh really is the City of Champions, with team members conquering every event included in Dick’s Sporting Goods Pittsburgh Marathon, Half Marathon, Relay, and 5K on May 14 and 15. Raising just over $9,100, the OAR team of 27 runners had a lot to be proud of.

Despite Sunday’s dreary weather, 18,000 marathon and half marathon runners had reason to smile as they crossed the start line to the jovial encouragement of Pittsburgh Steelers’ safety Ryan Clark, a guest announcer. Ten of the RUN FOR AUTISM team members completed their first half marathons and several more logged personal best times.

Along with 1,150 others, OAR runner Kim Larrabee kicked off the weekend at Saturday’s 5K. With 3.1 miles in the bank, Kim then turned to cheer on her husband, David, who would be running his first half marathon on Sunday. “A year ago, I never would have thought I would be doing a half marathon this weekend,” David shared. “The added bonus of raising some money for autism research made the experience even more memorable.” He raised $1,100 for autism research.

Two veteran OAR runners, Joe Pecora and Roger Dunlap, hit the Pittsburgh pavement this year. Dunlap, who with his wife runs in honor of their son Roger III, persuaded four close friends to run their first half marathons with him. The friends finished with shaky legs but big smiles, proud to have run and proud to support their friend. Dunlap raised $1,915 this year.

First-time OAR runners Heather Harkness and Stephanie Rodeno also topped the $1,000 fundraising mark. Harkness, who ran in honor of her son, Seth, raised $1,067. Proud family and friends cheered her across the finish line, and a pleased Harkness reported that the race “wasn’t as hard” as she thought it would be. Rodeno, whose son, Jack, was diagnosed with Asperger Syndrome at the University of Pittsburgh Medical Center before the family moved to Colorado, made the return to Pittsburgh to run the half marathon in her son’s honor, raising $1,230.

As this year’s RUN FOR AUTISM—Pittsburgh team members trickled in to the finish line Charity Village, their accomplishments began to sink in and they began to set goals for next year. Could they run the full marathon? Which family members could they inspire to run with them? With schemes and dreams already in the works, it’s safe to say that the next year’s Pittsburgh Marathon will be even better!

Top

Why I RUN

Cadence for a Cause
Cleveland JROTC Team Runs for Autism

.

Members of the JROTC pose at the finish line at the Cleveland Browns Stadium.

It’s amazing that a group of 10 teenagers, ranging in age from 15 to 18, agreed to get up very early on a Saturday morning, which also happened to be the morning after prom for some, to trek to the Cleveland Browns stadium, stretch, and then run a 5K.

That they did it to benefit OAR and people with autism is downright awe-inspiring. The group is part of the JROTC team at Horizon Science Academy in Cleveland, led by retired U.S. Army First Sergeant and instructor David A. Takacs.

The runners were Jonathon Henry, Travell Robinson, Darwin Henderson, Dominic Holutiak, TyShawn Vaughn, Reginald Warren Jr., Michael Brown, Christopher Benchek, Alundis Hayes, and Juan Rodriguez, and Takacs. They were well-supported by student volunteers, including Michael Huff, Alicia Sattlefield, Adaisjah Strother, Bre'Onna Mays-Taylor, Antoinette Berry-Snowden, Courtnie Adams, and teachers Megan McKinley and Rebecca Borchert.

The team participated in the Rite Aid Cleveland 5K presented by OAR, on Saturday, May 14, at OAR’s invitation. “We wanted to have a group of students showing unity and all running together in formation. These JROTC kids show dedication. In order to participate in this event, they spent hours outside of the classroom to prepare,” explains RUN coordinator Alex van Wees.

Their preparations included raising money as well. Reaching out to parents, friends, neighbors, and family for donations, the team raised $250.

As they got ready to run, the team lined up in a formation in front of all the runners. “We carried our guidon [a military flag that signifies the unit] with us,” explains Takacs.

The group ran in army combat uniform, singing cadence, Takacs says, and he was thrilled when “numerous runners ran along side of us and behind us the entire run. We were extremely proud that we inspired other runners to run with us and sing our cadences.”

“After the run, we were awarded medals, had some breakfast, and spoke to a lot of runners who thanked us for participating and motivating them to finish the race. The students and volunteers left Browns Stadium and went home and told all our family and friends about our accomplishments,” Takacs noted.

Recently honored as JROTC Teacher of the Year, Takacs says he was inspired by his students. “Even though our students have many issues of their own to deal with, they still came together to raise money for a great cause. It helped the students get more involved in the community and aware of autism.”

Top