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By Peter Gerhardt, EdD

Cornerstones and Changes Mark This Year

Since 2003, October has been OAR’s big month, putting the full OAR Board, Scientific Council, and staff team to the test. In one month, we held our annual conference and the final phase of our annual research competition and approved new research grants. At the same time, we were fielding teams of runners for the Chicago and Marine Corps Marathons and raising record dollars to fund new research and program initiatives. The intensity and most of the events continued this year. Just as important, however, we successfully introduced change. Therein lies the story of OAR as we approach 10 years.

Let me start with two cornerstones that continue:

2011 Research Competition. OAR just approved seven new research grants totaling $210,000. This brings our 10-year total to 134 studies and $2.5 million in research funding. What’s even more impressive is the growing list of professional literature by OAR-funded researchers and the number of OAR grantees who subsequently receive additional funding from various sources based on the quality of their OAR-funded studies.

Scientific Council. The nucleus of this group of professionals, who hail from all over the country, is largely unchanged from 2002, when I recruited them. That they continue to serve as members is testament to their belief in OAR’s mission. Their work throughout this period has been exemplary. They have reviewed more than 700 research proposals with enthusiasm and rigor, and they take making recommendations regarding OAR grants as seriously as deciding to spend their own money. Simply put, SCOAR, as we dub the group (from Scientific Council OAR), has been and continues to be OAR’s organizational backbone.

This year also saw the introduction of innovation:

Conference-on-the Road. While our core research program and SCOAR’s great work continue unabated, we did make some significant and somewhat risky changes to some successful programs and processes. Most notably, we made the difficult decision to give up our annual conference, despite its high ratings, in hopes of getting evidence-based information to more people in need in the autism community by taking the conference on the road.

With the Milestones Conference in Cleveland in June and the Autism New Jersey conference just a few weeks ago, the results are clear. We provided speakers and a Research-to-Practice track for both. In the process, we were able to provide information on research and current practice to more than six times as many people at less than half the cost. Most important, the reviews from individual attendees and both of OAR’s partners were uniformly positive.

Applying Technology. Each year, as the number of applications to the annual research competitions continued to increase and piles of proposals in triplicate poured into the office just in advance of the closing date, OAR Executive Director Mike Maloney and I looked forward to the day when OAR could afford to go to an online application and review process. We took the leap this year.

Adapting our paper process to an online one in a seamless manner for both applicants and reviewers was challenging but worthwhile. We introduced it for the Schwallie Family Scholarship program beginning in January and then rolled it forward to include the Graduate Research Grants Program and finally the just completed Applied Research Competition. Despite a few technical hiccups along the way, the consensus after one time through each of the three application cycles was unanimously positive.

As we look to 10 years of service to the autism community, the four things I just described speak to what OAR represents. With the research competition and the superb work of SCOAR, we adhere to OAR’s mission, fund quality research, and maintain excellence. In the decisions to give up a successful conference format for an untested and more challenging on-the-road model and abandon a time-tested paper process for scholarship and grant applications in favor of an untested online system, we have shown the capacity to embrace change and implement it effectively.

When we started OAR, we spoke in the future tense and acted on our good intentions. Today, during yet another October, we have a 10-year body of work that at once describes us and hints strongly at our evolving mission and ultimate purpose—to continue to change lives one child, one family, one person at a time.

I can’t wait to see what OAR does in the next 10 years.

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Salute

Dr. Brenda Myles Leaves 10 Years of Excellence to OAR

As the old English proverb says, “All good things must come to an end.” OAR experienced one of those endings this fall when Brenda Myles, PhD, one of the original members of OAR’s Scientific Council (SCOAR), decided to step down. Dr. Myles, a nationally and internationally recognized expert on Asperger Syndrome with a gift for offering effective strategies for teaching students on the autism spectrum in classroom settings, joined SCOAR in 2002 and has served continuously since.

Like all SCOAR members, Dr. Myles consistently lent her experience, expertise, and attention to OAR’s annual research grants competition, personally reviewing more than 100 grant proposals and participating in eight in-person final review boards in nine years.

“Brenda is one of a kind,” says SCOAR Chairman Peter Gerhardt. “She’s smart, compassionate, and selfless. I knew she was good when I invited her to join SCOAR. After working with her in that capacity for almost 10 years, my admiration for her as an autism professional and a person has increased even more.”

Dr. Myles did not stop at research reviews. From her first day as a member of SCOAR, she offered herself as a resource. When OAR staff would forward an e-mail inquiry relative to Asperger Syndrome seeking her expertise, she invariably would respond directly to the inquiring parent and often exchange several messages in the interest of offering assistance and advice. She also contributed several articles for this newsletter, one of which, “The Cycle of Tantrums, Rage, and Meltdowns,” appeared in the October 2004 issue and was subsequently selected for inclusion in the Best of The OARacle, Selected Articles 2002-2007.

Her most tangible contribution is Life Journey through Autism: An Educator’s Guide to Asperger Syndrome, the third publication in OAR’s Life Journey through Autism series. Recognizing the need to have a resource more focused on Asperger Syndrome and high-functioning autism than OAR’s first Educator’s Guide, Dr. Myles offered her expertise and the opportunity to draw upon the interest and talents of her graduate students. Together they wrote the content for this guide.

One of OAR’s goals from the outset was to try to make the complexities of autism and Asperger Syndrome more understandable. This guide did just that. It received high praise and wide distribution once published and led one mother and early reader to write: “The online copy moved me to tears with recognition of characteristics similar to my son, and when I passed it along to my son's teacher, she said, ‘Whoa. Now he makes sense to me!’ I plan to arm all future teachers with copies in advance of each school year to come!”

As Dr. Myles moves on in her professional pursuits, she has left an indelible mark on OAR. In a message to her in response to hearing the news of her departure, OAR Executive Director Mike Maloney voiced what many associated with OAR will think as they hear the news, “I hate to see someone who has contributed so much leave us. At the same time, because you have done so much so well for so many years, I am not going to do anything more than salute you for your excellence and professionalism and thank you on behalf of the Board, SCOAR, and staff.”  Congratulations and well done!

Taking Care of Business: Meet OAR’s Newest Staff Member

Armed with an MBA specializing in nonprofit management and experience in helping nonprofit organizations function at their optimal level, new business manager, Cody Waters, explains that he wanted to work for OAR “because I saw an opportunity to make a real difference in a situation that is becoming increasingly common in today’s society.” He looks forward to providing support for OAR’s business function, enabling the organization to concentrate on its mission of applied research.

After settling into his new home in Alexandria, Va., Waters began work on September 29. “I really enjoy the people I work with,” he notes, adding that his favorite part of the job so far is having the opportunity to “have a first-hand look into all of the internal workings of OAR.” A recent graduate of Eastern Michigan University’s MBA program, Waters has worked for the Girl Scouts and interned with the Make-A-Wish Foundation, which helped him build his knowledge of how nonprofits operate.

“I’ve spent my life volunteering and working with children, and have a young cousin who was diagnosed with an autism spectrum disorder,” says Waters, who was born and raised in Adrian, Mich., near Ann Arbor and only 10 miles from the Ohio border. “He is my little buddy, and responds to me much better than almost all other people. I’m not quite sure why, but when I speak to him, he listens. From that point on, I knew I wanted to figure out how I could help him, and all the increasing number of children diagnosed with autism.”

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OAR NEWS

OAR Seeks to Raise $50K to Mark 10 Years

With the 2011 research competition just completed and the holidays fast approaching, OAR is busy getting ready to celebrate 10 years in December and kick off what it hopes will be a record-breaking year-end fundraising campaign in honor of the occasion. The drive will combine both online appeals and a traditional letter campaign. OAR’s goal is $50,000.

“We have three objectives in this year’s campaign,” says Mike Maloney, OAR’s executive director. “First, we want to fund a research study. Next, we want to increase the number of grants to graduate students studying autism. Finally, we want to raise the funds we need to distribute the soon-to-be published Life Journey through Autism: Navigating the Special Education System.” 

OAR plans to award up to 10 research grants of up to $30,000 in 2012. In addition, it hopes to increase the visibility of its Graduate Research Grant Program and award five more for a total of 15 graduate research grants.

According to Allison Gilmour, OAR’s director of programs and community outreach, it costs $2.41 to mail one of OAR’s resource guides. Based on OAR’s experience with prior publications, Gilmour anticipates a requirement to deliver 1,000 or more copies in the next year.

December is the last month to make a donation for 2011 tax purposes. If you’re considering a year-end donation to a charity and looking for programs that impact the daily lives of children and adults with autism and their families, you need look no further than OAR. Help OAR mark 10 years and meet these important program goals by donating online via the Web site or by sending a check made payable to: OAR, 2000 North 14th Street, Suite 710, Arlington, VA 22201.

Before you make any donations, do your research. The tips from the Federal Trade Commission excerpted below offer some good advice. OAR welcomes your inquiries about its programs and finances. Please address your questions to OAR’s executive director, Mike Maloney, at the above address, by e-mail or by phone at 703-243-9727.

For an independent opinion about OAR and its 4-star charity rating, please check Charity Navigator. Or for more information, visit GuideStar and OAR’s Web site.

Tips for End-of-Year Giving

Because of tax considerations, the end of the year is the season for charitable solicitations. With more than a half-million federally recognized charities, including OAR, soliciting contributions, chances are you’ll be asked to donate. Here are some tips from the Federal Trade Commission (FTC) to help you give wisely:

• Request written information. A legitimate charity will give you information outlining its mission, how your donation will be distributed, and proof that your contribution is tax deductible.
• Ask for identification. Many states require paid fundraisers to identify themselves as such and to name the charity for which they’re soliciting.
• Check out the charity’s financial information. For many organizations, this information can be found online at GuideStar, a national database of nonprofit organizations or by contacting GuideStar directly (427 Scotland Street, Williamsburg, VA 23185; 757-229-4631). (Many like OAR post financial and annual reports on their Web sites as well.)
• Ask how your donation will be distributed. Find out how much will go to the program you want to support, and how much will cover the charity’s administrative and fundraising costs. (In OAR’s case, 83.4 percent of each dollar goes toward research and programs; 15.6 percent toward administrative and fundraising costs.)
• Avoid cash gifts. Cash can be lost or stolen. For security and tax record purposes, it’s best to pay by check.

You can download and read the full FTC Charity Checklist (PDF).

In addition to GuideStar, the following organizations may provide helpful information on the charities you are considering:

American Institute of Philanthropy
P.O. Box 578460
Chicago, IL 60657
773-529-2300

CharityNavigator
139 Harristown Road Suite 201
Glen Rock, NJ 07452
201-818-1288

OAR Heads to the Boardwalk for its Second Conference-on-the-Road

On October 13 and 14, OAR joined Autism New Jersey for its 29th Annual Autism Conference in Atlantic City, New Jersey. The conference was a great success for Autism New Jersey, which welcomed more than 900 attendees from all over the East Coast on both Thursday and Friday. The conference also proved a second success for OAR’s new approach to its education mission -- partnering with established events instead of holding an independent conference.

In its second Conference-on-the-Road event of the year, OAR sponsored five presentations in the “Research Track” at the conference. Attendees heard OAR researchers and autism experts discuss peer mediation, flexibility, and workplace support.

“The Autism New Jersey Conference was a great opportunity for OAR to promote our mission,” says Cody Waters, OAR’s new business manager. (Read his introduction in this issue.)  “Our presenters are among some of the most knowledgeable autism professionals, and it was great to see them fit in so well with the Autism New Jersey Conference.”

One of the highlights in OAR’s research track was a presentation from two of OAR’s former research funding recipients, Laura Anthony, PhD, and Lauren Kenworthy, PhD, from the Center for Autism Spectrum Disorders at George Washington University School of Medicine. They presented information from their new book, Unstuck and On Target!: A New Executive Functioning Intervention Teaching Flexibility, Goal-setting and Planning at Home and in School. OAR funded the seed grant for this research on improving flexible thinking, which led to a larger grant from the National Institutes of Health and the publication of this useful guide.

Read more about Unstuck and On Target! on the publisher’s Web site.

Philanthroper Day of Giving Raises More Than $700 for OAR

On September 28, Philanthroper.com chose OAR as its featured charity. A new Web site that encourages philanthropy, Philanthroper.com highlights a different nonprofit each day, giving donors the opportunity to support that nonprofit for as little as $1.00. The company’s goal is to “make doing good a habit” and to make donating easy and accessible.

“Honestly, we had no idea what to expect,” shares Allison Gilmour, OAR’s director of programs and community outreach. “The people at Philanthroper said we would be lucky to raise even $500 but we raised $755. It really shows the potential of social media as most donations came in from links posted on Facebook and Twitter.”

The $755 will be used to help fund an ongoing graduate research grant. Each year, OAR awards grants to graduate students conducting autism research in hopes of encouraging these rising stars to pursue careers in the field of autism. Students pursuing master’s degrees receive up to $1,000; doctoral students receive $2,000.

As the dollars added up, this opportunity also helped spread OAR’s name and mission. With thousands of visitors to the Philanthroper Web site each day, more people than ever know about OAR. Thank you to all who donated and shared the link!

Second Maximizing Success Proves to be a Maximal Success

On Monday October 3, OAR and Behavioral Directions, LLC presented Maximizing Success: Using Task Sequences for Independence. “This seminar was jam-packed with information,” says Allison Gilmour, director, programs and community outreach. “I was impressed with how much information Dr. Barbin was able to share in only two hours.”

Attendees learned about task analysis, chaining, promptings techniques, and error corrections. Dr. Barbin shared examples from children with whom she works, as well as videos and hands-on examples. Feedback proved what a successful seminar this was, with 95 percent of attendees saying they would recommend the seminar to a friend. As one professional attendee stated, “The video and photo examples were useful and it helped me to see the practical application of theory.”

OAR thanks Dr. Jane Barbin and Behavioral Directions, LLC for such an informative and useful seminar. This event was a perfect example of OAR’s goals in action -- to provide research-based information to people in easy-to-use formats that can be applied immediately.

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News from the autism community

Researchers Seek Participants with Autism for a Brain Imaging Study

Researchers at the National Institute of Mental Health (NIMH) are seeking adults with autism spectrum disorders to participate in a brain imaging research study (Protocol: 10-M-0068, “Effects of Prosocial Neuropeptides on Human Brain Function in Healthy Volunteers and Individuals with Autism Spectrum Disorders”).

This outpatient study will be conducted at the National Institutes of Health Clinical Center in Bethesda, Md. There will be an initial screening appointment and three visits of about 2.5 hours each. During each visit, participants will receive a nasal spray containing either a drug (vasopressin or oxytocin) or placebo (a solution containing no medication). After receiving the nasal spray, participants will be scanned using functional magnetic resonance imaging (fMRI) while performing various computer-generated tasks.

The research team is looking for participants who are right-handed, between 18 and 40 years of age, and have a diagnosis of autism, Asperger Syndrome, or pervasive developmental disorder- not otherwise specified (PDD-NOS). There is no cost for participation. Compensation will be provided.

If you are interested please call 301-435-7962 (TTY: 1-866-411-1010) or e-mail NIMH-ASD@mail.nih.gov.

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Applying Research

Study Sheds Light on Support Groups

Little research exists on the use of support groups and social skills groups for adults with autism. A new study, Support Groups for Adults with Asperger Syndrome, presents some useful data in this area. Since this study was a survey and qualitative in nature, the data does not present any conclusive findings, but it does shed light on interesting considerations when creating support and social skills groups.

Kathryn Mederise Jantz, MSW, who has worked with the Asperger’s Association of New England, interviewed 35 adults with Asperger Syndrome ranging from 24 to 77 years old to determine to what extent they use support groups. All of the participants currently participated in support groups, wanted to participate in support groups, or had participated in support groups in the past. She interviewed each participant to determine what he or she hoped to learn or had learned from his or her participation and gave each participant the Autism-Spectrum Quotient questionnaire and UCLA Loneliness Scale.

Based on her analysis of the results, adults enrolled in support groups were more likely to be receiving mental health services outside of the group. The top reasons for attending or wanting to attend a support group were social skills and interaction, information and advice, structure, or they were encouraged to attend by someone else.

All participants in the survey received high scores on the loneliness scale, an indication of more feelings of loneliness, even those who were currently in support groups. This suggests that support groups alone do not address the issues of isolation, lack of friendships outside of family, and social skills that participants in the survey hoped support groups would address.

This survey shows that while support groups may exist for adults with Asperger Syndrome, they may not be providing the full range of support participants desire. More interventions need to be developed and researched to teach adults with autism social skills. Current studies of social skills curricula for young adults and adolescents could be adapted to address some of the issues participants in this study cited as motivation for joining a support group.

References

Jantz, Kathryn Mederise. (2011). Support for Adults With Asperger Syndrome. Focus on Autism and Other Developmental Disabilities, 26(2), 119-128.

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science, fads, and applied behavior analysis

By Thomas Zane, Ph.D., BCBA-D

What Does the Evidence Show Us?
The Role and Benefits of Autism Service Dogs

Dr. Thomas Zane is a professor of education and director of the Applied Behavior Analysis Online Program at the Van Loan Graduate School of Endicott College. He is a licensed psychologist in New York and Massachusetts. Dr. Zane has published in various journals and books, presented at regional, national, and international conferences, and been an invited lecturer in Ireland and the Republic of China. His research interests include teacher training, staff development, and evidenced-based practice in autism. As part of his duties at Endicott College, he offers a BCBA certificate program through distance learning.

Animals have long been used to provide unique services for individuals who need specialized assistance in some way. For example, Seeing Eye dogs are trained to provide assistance to persons with visual impairments to negotiate the physical environment. In addition to providing such basic services as security and protection, animals have been used to provide emotional and psychological comfort and support to people (e.g., Hall & Malpus, 2000). In fact, it has been experimentally shown that social interactions can increase simply by being in the presence of a dog (McNicholas & Collis, 2000).

The increasing incidence of autism spectrum disorders has resulted in an increase in therapies designed to treat this condition. A recent development has been the training of dogs to specialize in working with persons with autism spectrum disorders. Proponents of “autism dogs” assert that these dogs can support the unique challenges of persons on the spectrum. This article reviews the current knowledge and research in this area.

How “Autism Dogs” Are Used
Trained to assist a person with autism, an “autism dog” is usually connected physically to the person with ropes or other forms of tethers. There are two primary objectives for such dogs.

First and foremost, they are considered “service” dogs. According to National Service Dogs (2011), the mission of these animals is to increase the safety of the person with autism. For example, such a dog may lower the likelihood of the person bolting or crossing a busy street, because it is physically connected to the person with autism (Autism Service Dogs, 2011). The dogs are trained to follow commands from parents, stop at doorways, and resist the child moving away by using its weight to slow or stop the child (e.g., Burrows, Adams, & Millman, 2008a; Burrows, Adams, & Spiers, 2008b).

Dogs also have been known to alert parents of potentially dangerous situations at night (e.g., child waking up unhappy or getting out of bed and walking around). This can result in not only the person with autism remaining safe from harm, but also parents and other family members being calmer, happier, and more relaxed knowing that the safety issue is less of a concern. One difference between autism service dogs and other service dogs is that typically, service dogs are trained to bond primarily with the person whom the dog will be helping. However, autism service dogs are trained to primarily bond with and take instructions from the parent(s), but trained to work with the person with autism (Burrows, et al., 2008a).

Some proponents assert that such dogs do more than enhance physical safety. Some  (e.g., Autism Service Dogs of America, 2011) argue that the dogs provide a “calming presence” that  “can minimize and often eliminate emotional outbursts.” Some advocates believe that such dogs can provide “…. a focus through which the child can interact with other children. This helps increase the opportunity for the child to develop social and language skills.” Burrows, et al. (2008a) believe that dogs can positively influence children with autism in the areas of arousal and sensory stimulation, improving concerns in these areas. In addition, dogs can function as a “transitional object,” allowing the child with autism to first bond with the dog, an easier creature with which to do so, and this may eventually increase bonding with humans.

Obtaining a Service Dog
To obtain a dog, parents must apply to one of the organizations that supply these animals (e.g., 4 Paws for Ability; Autism Service Dogs of America; National Service Dogs). The cost is approximately $20,000. There appears to be no exclusionary criteria for either the diagnosis of autism (autism, Asperger Syndrome, PDD – NOS) or the age. Four Paws for Ability (http://www.4pawsforability.org) specifically states that age or severity of disability does not exclude one from getting a dog. On the website for the Autism Service Dogs for America (http://autismservicedogs.com), the application does not focus much on the functioning level of the target child. Several questions are asked about the type of problem and the behaviors exhibited by the person who will receive the dog (e.g., oversensitivity to sound, self-injurious behavior, lack of social reciprocity). No statement can be found as to exclusionary criteria.

To train a dog to perform such service functions, there is an intense and lengthy period of instruction. Once selected, a trainer and family work together to habituate the dog to the family and child with autism, train the parents on the commands that will be given to the dog, and assimilate the dog into the family routine.

The popularity of the supports these dogs provide appears to be increasing. Several of the agencies claim to have a waiting list. For example, National Service Dogs is constructing a new facility for training and education, and eventually will be able to place 40 dogs annually and will be able to expand outside Canada. Since 1996, this one organization has placed over 170 dogs.

Evidence of Effectiveness
As with many strategies and treatments when it comes to autism therapy, one must ask whether or not there is evidence of effectiveness of autism dogs providing the services advocates claim they provide. The literature describes two primary positive outcomes:

• Enhanced physical safety and security
• Enhanced social, learning, and emotional improvements

When reviewing the literature for research on the effect of autism dogs, there are many testimonials, some case studies, and only a few actual studies incorporating anything resembling a form of research design. Most of the research done on this topic consists of qualitative research, involving interviewing as the means for collecting data. Thus, the quality and validity of the information collected on ascertaining the effects of the autism dogs must be viewed cautiously.

Nevertheless, most of the outcome studies support the notion that these dogs do provide increased physical safety and security. For example, Burrows and Adams (2005) and Burrows, Adams, and Millman (2008) reported that parents consistently claimed that the dogs prevented children from bolting and running away. Parents relaxed more during bedtime knowing that the dog would alert them should the child with autism leave the bed or exhibit some other potentially dangerous behavior. Because of the dog’s ability to physically prevent the child with autism from behaving in a dangerous way, parents felt more in control and calmer. Most of the dogs accepted the jackets in which they were placed and followed commands well. Parents reported immediate satisfaction and reduction in concerns about safety issues.

The research is less convincing when attempting to definitively ascertain whether the presence of the autism dog results in the learning of new skills, the improvement of emotional status, increased socialization, and fewer behavioral concerns. Some parents noticed new skill development. For example, after being with their dogs for a period of time, some children began regulating walking pace and developing improved motor skills and control. Burrows, et al. (2008a) found that some of their participants began learning dog-care tasks (e.g., feeding the dog by taking lid off food container; putting food in bowl; putting bowl on floor; commanding dog to eat).

Additionally, motor skills improved in some children who learned to pet the dog. The authors also found that, according to parents, the children exhibited decreased anxiety, were calmer, and engaged in fewer tantrums and other disruptive behaviors. Some parents even reported improved bedtime routines, and that the children “just seemed happier.”

Using a more sophisticated design, Farnum and Martin (2002) investigated the impact of such dogs on the mood and social abilities of children with autism. The researchers systematically varied three different conditions consisting of a simple toy, stuffed dog, and real dog. They found that the participants demonstrated greater positive mood and “focus” on the environment when in the presence of the autism dog. However, this study has not been replicated and there are some methodological issues that limit the validity and generalization of the conclusions.

Effects on the Dogs
Interestingly, Burrows, et al. (2008b) also studied the impact of several variables on the dogs themselves. The authors conducted a series of interviews with members of 11 families who used dogs for their persons with autism. Parents were interviewed at three different time periods – when they were receiving training with their new dog, and every third month for 6 months.

The authors reported that generally speaking, the dogs were loved and bonded well with all members of the family. But the dogs were placed under significant stress, given the peculiarities of being with a child with autism. For example, some dogs could not sleep for long periods of time, if a child with autism went without sleep. Some dogs spent long hours in their jackets and inhibited urination and defecation if accompanying the child to school. Some children engaged in aggression towards the dogs, causing dogs to startle and move away from the child. The authors reported that some dogs eventually learned the cues that the child might suddenly display inappropriate behavior, or learned to discriminate between cries of needing something and cries that would signal aggression or tantrum.

The authors also discussed their results in terms of the impact of the dogs on social interactions. Generally speaking, dogs bounded primarily with one or both parents, and to a lesser extent, the child with autism (also supported by Burrows, et al. 2008a). Only four of the children with autism showed interest in the dog, defined as petting or initiating any sort of social approach. Dogs preferred interactions with parents and followed their commands. Generally, the child with autism provided less attention and social contact with the dog than did other family members.

Conclusions
Autism service dogs seem to provide a measure of safety to a child with autism. When tethered to a child, such dogs can prevent or minimize the child getting injured or lost. Such dogs also seem to be able to provide monitoring during the evening allowing parents to be more confident that their child will remain safe and that the dog would warn the parents should a need arise.

The evidence is less compelling when considering whether the autism dogs themselves are the reason for increased learning in the areas of motor, emotion, social, or adaptive behavior areas. They do not have any special capacity or “sense” of a special emotional connection with persons with autism. Rather, dogs can be the medium in which the child practices skills, such as learning to feed the dog. However, the reason for learning is most likely the repeated practice instead of any special characteristic of the animal.

In addition, the other areas of improvement noted in these qualitative studies – such as the children being happier, engaging more in positive social interactions, and displaying reduced number of tantrums – cannot be confidently believed, due to the data collection methodology and lack of reliability and validity of those data.

Autism dogs seem to have a role to play for the physical security and safety of children with autism. And that reason alone may be powerful enough to consider using one if it can be financially afforded. The impact of the dog on learning and other behavior remains to be determined in a more rigorous manner, and until that time, the use of autism dogs should be limited to enhancing safety of the child.

References

Autism Service Dogs (2011). Retrieved October 18, 2011. http://autismservicedogsofamerica.com/

Burrows, K. E., & Adams, C. L. (2005). Evaluating the benefits of service dogs for children with autism spectrum disorders. Retrieved on October 21, 2001 at www.cnaf.net/documents/NationalServiceDogsStudy.pdf

Burrows, K. E., Adams, C. L., & Millman, S. T. (2008a). Factors affecting behavior and welfare of service dogs for children with autism spectrum disorder. Journal of Applied Animal Welfare Science, 11, 42-62.

Burrows, K. E., Adams, C. L., & Spiers, J. (2008b). Sentinels of safety: Service dogs ensure safety and enhance freedom and well-being for families with autistic children. Qualitative Health Research, 18(12), 1642-1649.

Hall, P. L., & Malpus, Z. (2000). Pets as therapy: Effects on social interaction in long-stay psychiatry. British Journal of Nursing, 9(21), 2220-2225.

McNicholas, J. & Collis, G. M. (2000). Dogs as catalysts for social interactions: Robustness of the effect. British Journal of Psychology, 91, 61-70.

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News for Run for autism

RUN FOR AUTISM Rocks the City of Brotherly Love

On September 18, OAR’s RUN FOR AUTISM team took to the streets of Philadelphia for the Rock ‘n’ Roll Philadelphia Half Marathon. Known for more than cheesesteaks and Rocky, Philadelphia offers one of the fastest races in the United States. With over 21,000 runners and a large field of elite runners, this is quickly becoming the destination to chase down a personal record.

In OAR’s second year at Philadelphia, the team saw a big jump in runners as well as fundraising. OAR’s 27 runners, which included a mix of veterans and first-timers, raised more than $18,000 for autism research. All enjoyed the fantastic running weather as they raced by many Philadelphia landmarks.

First-time OAR runner Mark Brogan earned the distinction of top fundraiser this year by reaching an amazing $2,212, while veteran OAR runners Jill Crossman and Rod Elam finished with $1,675 and $1,335 respectively.

OAR runners are not only known for their amazing fundraising, but their speedy times as well. Stephen Britt led all OAR runners with a finishing time of 1:31:17, just 32 minutes behind Mathew Kisorio, the overall winner and record holder of the fastest half marathon on U.S. soil.

Local fireman Tim Damiani finished with an impressive time of 1:47:30, while Olga Sher completed the 13.1 miles in 2:02:43 in her first race at this distance.

Brothers Matthew and Nicholas Smith made it a family affair choosing to run Philadelphia together and raise $1,390 in the process. It’s also a family affair for the Masellis as runner Jennifer Maselli enjoyed cheers from her husband, Chris, and their three children. This month they’ll switch places when Chris runs the Marine Corps Marathon as part of the RUN FOR AUTISM team in Washington, D.C.

With a growing team and record-breaking fundraising, the Rock ‘n’ Roll Philadelphia Half marathon marked another success for OAR and the mission of funding autism research. Thank you, runners!  OAR looks forward to an even bigger RUN FOR AUTISM – Philadelphia team in 2012 and surpassing fundraising records once again.        

If you are interested in helping OAR recruit for 2012, participating in another race, or just have a general inquiry, please contact the RUN FOR AUTISM staff via e-mail at run@researchautism.org or by phone at 703-243-9710. Find us on the Web at www.researchautism.org.

On the Run
It Takes a Village to Keep Up with the Schneiders

Alex (Alie) and Jamie Schneider are identical twins, 21 years old and severely autistic. Neither one of them communicates verbally with the exception of simple words, which can be hard to understand for those who don’t know them well. They have found common ground, however, with their peers and others through running. “Through the many years of learning in an intensive, structured ABA program, the idea of inclusion with their peers was only a dream. Running has made that dream a reality,” their mother, Robyn Schneider, happily exclaims.

The Schneider family lives on Long Island, N.Y., and was fortunate to find a running club for people with autism, Rolling Thunder. Today, the Schneider sons are celebrities in the running community, notes Robyn who is the coordinator of external and legislative coordinator at Eden II Programs, where the boys go to school. “They have been featured on the front page of the New York Times, Newsday, and the Southampton Press as well as other publications. Placing first or second in their age group is very common and our home is overflowing with the more than 80 trophies, plaques, and medals that adorn every room.” Jamie and Alex gained entry and ran in the 2011 Boston Marathon, where Alex finished in four hours and Jamie in six.

Their father, Allan Schneider, a semi-retired real estate broker, used to take them running on the beach and when they were about 13, they began easily surpassing him. “The very first day at Running Thunder, the coaches came to us and told us we must concentrate on their training, because they are very gifted. The boys always loved running and it’s become the focal point of their lives,” he says.

“Running has changed our family life dramatically. Running is the number one activity for the boys and for us as a family,” Robyn adds. She often runs or rides her bike with the boys. “This is so exhilarating for me, as I can share the experience with them.”

Robyn and Allan say that Alex and Jamie would not be able to maintain the training and running schedule they do without the help of their volunteer coaches. Alie relies on long-time coach Kevin McDermott and a newer coach, Stephen Dalton, while Jamie trains with his dad and, more recently, Katie Raab-Reed.

They have always been physically active and gifted athletes, Allan says. They began running in races and marathons when they were 15, depending on volunteer coaches to run with them for support and guidance. Jamie and Alex and their coaches will have completed three marathons, once they complete the upcoming Marine Corps Marathon in Washington, D.C., on October 30, which marks their first marathon for OAR. “We’re coming up on 100 competitive races that they have done,” Allan notes.

For Alie and Jamie, these workouts are not so much work as a lot of fun, says Robyn. “Jamie can run long distances with very little effort, usually singing or vocalizing along the way. He can easily run over six hours and does so with plenty of energy to spare! His happiest runs are when there is a pretty girl (preferably blond, with a swishing ponytail), running near him. He will quickly speed up to run beside her! Alie follows Kevin’s instructions precisely. And because running is such a potent reinforcer, he is on his very best behavior.”

Kindred Spirits
“Alie came in to Running Thunder with some talent,” says McDermott. “After a few months, he was running faster than many of our coaches. They were getting injured trying to stay with Alie. I was the fastest coach in the club at the time so we got paired up.”

“We are kindred spirits, both obsessed with running,” he explains. He is delighted by Alie’s willingness and enthusiasm. “He never balks at a workout, never wants to stop at halfway, even when I ask.” In fact, McDermott admits he sneaks in runs between his training sessions with Alex so that he can to stay up with or ahead of him.

McDermott had begun volunteering with Rolling Thunder not too long before the Schneiders brought Alex and Jamie. “The head coach is a character. He saw me at a few races. At one, he pointed at me and said you run with her. I ended up running with a young girl in a 5K race.” And he’s been training and volunteering with Rolling Thunder ever since.

A self-employed floor installer and former missionary, McDermott makes time to train with Alex three days a week. “Alie is not very verbal but he’s very smart and understands what I say. I talk to him during runs. He listens to me bellyache but he doesn’t do it. When I ask him how he feels, he says ‘I feel good.’”

Dalton, who is originally from Ireland and now works as a bartender in New York City, started coaching Alie with McDermott in 2010. He and his wife, Danielle, have been close friends with the Schneiders for years. “Danielle worked with the twins in their home from the time they were 8 years old until they were 16, providing ABA therapy and subsequently speech therapy for Alex and Jamie. Our families have remained close since then.” In fact, his children, Oscar, 4, and Amelia, 2, love coming to races to cheer on Alex and Jamie with homemade signs.

After he ran the Blazing Trails 4-Autism Four-Mile Race, which Robyn coordinates to raise money for the school Alex and Jamie attend, and the Hamptons Half Marathon in 2010, Robyn asked if Dalton would coach Alex and run the Boston Marathon with him. “Training for Boston with Alex and Kevin was such a rewarding experience,” Dalton explains.“Over that time, the three of us became such a cohesive unit that running and training together for the future seemed like a natural progression.”

Dalton explains that he and McDermott coordinate the training, with “a specific goal in mind, normally choosing our next race and then training with that race date and distance in mind. Whether it’s a three-hour plus long-distance run or intense one-milespeed workouts, Alex is a serious athlete almost always placing in the top three of his age group in the races he runs.

“The beginning of the race is the most challenging when running together. The crowded starting line is typically filled with runners focused on getting out in front and getting a good start to their race. This can be distracting for Alex and it is the coach’s job to make sure he does not get jostled around or trips. Other responsibilities in general when running with Alex include, keeping him aware of his surroundings, such as avoiding large water puddles, ice patches, snow, etc.; being mindful of crowding on the course; and reminding him to watch where he is going,” Dalton explains.

“Alex is a very talented runner with a seemingly unlimited resource of untapped potential,” he says. “It is exciting and challenging to run with him and to help him reach his full potential.”

Gifted with Athleticism
Allan and Raab-Reed are Jamie’s coaches. “I was in good shape, but I was never a runner, until a pivotal race that Jamie was in,” says Allan. “I was on the sidelines at the finish line and saw Jamie fall over the finish line, with his knees skinned up and bleeding. He had thrown himself to the ground during the race because something upset him. That’s when I decided I needed to get involved. He had great coaches but I felt as his parent, I could address the behavioral issues.”

Even then, it didn’t immediately get better, Allan notes. “Right off the bat, I had issues. He was still very erratic, but I learned how to sense and deflect any difficult behavior. Now, we’ve had three years of pretty well-managed behavior. He’s had to slow down a little so I could keep up with him, but he is also a happier runner. He still gets nervous sometimes, but generally he does just fine.” Allan has run a couple of marathons with Jamie since he first began coaching him.

Raab-Reed, who also runs with Jamie, was placed in the twins' classroom in December 2005 at the Genesis school as a teacher's assistant and shortly after began working in their home program as a behavior specialist. “It is an absolute pleasure to work with the boys and both Allan and Robyn are very welcoming to all of their teachers.”

“Not only is Jamie athletic,” notes Raab-Reed, “but he has a love for art and projects that involve intricate shapes and patterns. He sees colors differently than I do and I'm always amazed how he pairs colors together and just makes it work. Jamie also has a love for music and will sometimes break out into song and dance to express how happy it makes him. Working with him can bring a smile to your face in an instant.”

About a month and a half before the Boston Marathon, the Schneiders asked Raab-Reed to run with Jamie and Allan during the second half of the marathon. “I began training with Allan and Jamie the following weekend. The Schneider family had inspired me to take up running again after many years of absence to the sport so I was ecstatic to be a part of Jamie's second marathon. I am so proud of these boys; running is hard work and their love for the sport shines through the second they start moving.”

Jamie’s needs determine the coaching methods, Allan says. “I’m not a coach I’m a parent who took up running. I throw in everything but the kitchen sink. Jamie’s behavior can be erratic so I make decisions as we go. For instance, if his behavior starts to become difficult, I will change our pace or shoot off on a different trail or start a conversation to get his attention onto something else.”

Raab-Reed follows Allan’s lead since he and Jamie have established a working routine. “I only get to join in on the weekends for the long runs so I am lucky to spend several hours running on the trails with them. Basically I feel out Jamie's mood, sometimes he wants to be the leader and other times he'd rather run next to you. There's been a few times when both have us have been pushing each other's pace, making the other one work hard to keep up, and it almost turns into a game of tag. Jamie is definitely tuned into his body and knows when to turn down the heat for a walk break.”

Gifted with athleticism, running the Boston Marathon was a breeze for Jamie, Raab-Reed notes with a smile. “He sailed through the entire Boston Marathon as if it were only a 5k. He has an incredible amount of energy in his stride and when he hit those hills in Newton, he charged up them without breaking a sweat.”

On the Go
While it’s meant sacrifice for Allan and Robyn, overall, it’s been a great gift for the boys to have running to concentrate on. They are almost constantly on the go, no matter the weather, meaning that Allan or one of their volunteer coaches has to be ready to go with them. “We’ve can’t just sit them in front of the television. If they aren’t running, they are walking or biking in any weather under any conditions,” says Allan. The Schneiders set up a gym in their basement to give themselves and boys a place indoors to train. Even so, Allan notes, it’s a lot of work for him to coach Jamie and for his wife to manage their volunteer coaches and training schedule.

“We haven’t imposed any of this on them,” he notes, “They have such a love for it and we just feed that.” In fact, he says that he and Robyn would not be able to keep up with the boys’ love for physical activity if it weren’t for the volunteers who run with the boys. “So many people have helped us, the volunteers and other club members and runners. It’s become our social life.”

“It’s good for them and good for us and we’ve had incredible health benefits and the opportunity to get to know an incredible group of people who support the boys,” says Allan.

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Why I Run

Off the Couch and on the Way to a 10K

Tracy Day would probably argue that she is nobody’s role model. But listen to her story and decide for yourself. You will likely disagree.

Day is set to run the Marine Corps Marathon 10K at the end of October, having trained for that event by running the Marine Corps’ Semper Fred 5K in May, the Strider’s Women Distance Festival in July, and the Navy 5-miler in September.

When she started running, Day was no one’s idea of a runner. “I had been unhappy with my weight for some time. I was tired all the time and that was just from going through the motions of life - not anything ‘extra’ like exercising! Not to mention how hard it was to find even semi-attractive clothing in my then plus size.” She knew she couldn’t start with running so she began by riding a recumbent stationary bike. “I did it for 20 minutes at a time. As the weight came off and I had more energy, I began to think about running.”

Day’s father had died at 53 while she was pregnant with her son, Thomas, now 10 and diagnosed with an autism spectrum disorder. “One of the things I wanted to do ‘sometime’ before I turned 53, the age my dad was when he died, was to do a marathon,” says the 41-year-old Day. “I now know that many people walk marathons and think that is great, but to me marathon has always equaled running. If I was going to run that distance I had to be able to run shorter distances first.”

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Tracy Day celebrates the completion of her 5-mile run with son Thomas and daughter Georgia.

Taking the First Step. And Then Another.
Many people who started out where Day did would barely have been able to consider walking one mile, letting alone running five miles to get in shape for a marathon. But Day just put on her shoes and started off. “I trained on my own and really struggled through the couch to 5K program I found on Google. So I abandoned it and decided to do my own thing. After all, it would be no shame if I walked some of the 5K. Finishing under an hour was my initial goal.”

Then she found a running workshop in Howard County, Md., where she lives, the Howard County Striders, a women's only training group called "FIT" (for Females in Training). “To my amazement, I was sorted into the runners ‘b’ group and not the run/walk as I expected I would be,” she notes happily. “In that group, I ran for longer and further than I ever had on my own. I enjoyed it so much I signed up for the fall group called "GIRL" for ‘Getting Inspired to Run for Life.’ I hadn't thought of myself as a ‘group’ person, but I really, really enjoyed it! The FIT and GIRL ladies rock!”

Down the Road
Now she is looking forward to her 10K, confident and prepared and a lot more fit and healthy than when she started. Her motivation has not been just about getting fit for herself. She runs for her family, including her husband, Royce, Thomas, and her daughter, Georgia.

The overarching motivation for getting in shape, though, is Thomas. “While Thomas is fairly high functioning I have always had worries about how independent he will be when he is older. Sometime before I decided to take charge of losing this weight, I had a dream in which it dawned on me that if I kept on the path I was on, I would die. Who would take care of my boy? I had to make sure I was healthy and around as long as possible so I could be there for him for however long he needs me.

“Thomas is one of the sweetest children I know. I truly don't think he has a mean bone in his body. He is always quick to comfort others when they are upset and ask, ‘What's wrong?’ One of the things we call him in our family is ‘our angel boy.’ And he has an incredible memory for anything mechanical -- especially cars. He can tell you the exact make and model of the brand many friends/family members and teachers drive.”

Day decided early on that she would be more likely to stick with her running program if she had a cause to run for. When she googled “Run for autism,” OAR was the first hit. She signed on and has raised almost $400 so far. She’s delighted by the support of her friends and family who believed she could do it even when she wasn’t so sure.

Now, she’s busy planning a 2012 run, noting that she will be running for OAR. “I will be more proactive as I approach my next big race for 2012. I think I want to shoot for a half marathon, possibly the one in Cleveland. I don't think I'll run the entire thing -- I have yet to run an entire 5K without a walk break -- but there is nothing wrong with running what I can and walking what I have to.”

That’s what makes Day extraordinary—her willingness to put one foot forward and then the other, walking when she has to and running when she can, knowing she’s giving herself and her family the greatest gift of all, while supporting OAR and its work.

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