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

December 2003

Holiday Trials and Triumphs,
by Scientific Council Member Suzanne Letso

Scientific Council Member Suzanne Letso (center) with her daughter Meredith, husband Roger and son Tyler.

The holiday season is upon us once again. For those of us with children with autism in our households, this time of year poses a variety of surprises - some poignant, others down right hilarious - but unfailingly different from the more typical families of our friends and neighbors.

There are two children in my home, Tyler, my 14-year-old son with autism, and his sister, Meredith, who is 12. So, we have had some practice at surviving the holiday season. From my perspective, as a mother and autism education professional myself, there are a number of challenges we parents of children with autism face that only someone else who has walked in our shoes might ever suspect.

I used to dread the question, “What does Tyler want for Christmas?” when I knew Tyler really didn’t want any presents. Even though he was not all that interested in the contents, the gift wrap, tags, bows, and ribbons have always held infinite appeal for him. Presents could not be left unattended under the Christmas tree. My husband, Roger, and I implemented a variety of diversionary tactics and “bait and switch” procedures to ensure gifts remained intact until they could be delivered to their intended recipient. It took years, but Tyler has learned to both appreciate presents and to resist opening them.

Attempting to participate in gatherings with extended family is always an adventure. The routine is different, the people are numerous and unfamiliar, the noise level is above Tyler’s tolerance level, and the food might either taste or look different. Then again, there have been the parties where the food was so appealing to Tyler that he was helping himself from any plate and serving dish within arm’s reach! Who would have guessed he could reach so far or move so fast? Tyler’s teachers have worked hard to teach him to tolerate changes in his routine, novel people, crowds, and noisy places. They have expanded his repertoire of foods, and have taught him not to take food from someone else’s plate (well, most of the time anyway).

Keeping my son sitting in the pew during at least 65 percent of a long Christmas mass, and simultaneously blocking him from rubbing his face in the fur coat worn by a woman in the pew in front of him required physical dexterity and determination, as well as an ability to pretend to be oblivious to public scrutiny. However, that was only half the battle. Tyler was not shy about letting everyone in church hear his opinion regarding the prolonged church service. While I am sure some people agreed with his assessment of the situation, other worshippers were less than thrilled to have this sentiment expressed so vigorously. Tyler has learned to tolerate waiting, and we have learned to bring an activity such as a Gameboy with us when we attend weddings, concerts and other public events.

During other social gatherings, we have learned to deal with unexpected issues. Four years ago, we had a Christmas party for about 50 people at our house. Many of the women wore dresses and fancy holiday stockings which Tyler could not seem to resist touching. Some of our guests were mightily surprised to find my son’s hand sneaking up the back of their legs. Not wanting a repeat performance, we implemented a “don’t-touch-the-stockings program,” which he has thankfully mastered and successfully maintained (at least so far, check in with me in January).

We do our best to anticipate problem situations and plan ahead, sometimes months ahead. In general, our son has learned many things that have improved our quality of life as a family. But, we could not have done it alone. It has taken thousands of hours of dedicated, patient instruction from many teachers to help our son learn the countless things he could not learn on his own that contribute to his, and our ability to enjoy life as a family at Christmas, and every day of the year. We have faced many challenges, but have also celebrated hundreds of small accomplishments. Our lives have been forever changed by the work of unseen, unknown researchers who have painstakingly assembled a cache of effective teaching strategies, as well as by those people who diligently work with us elbow to elbow year after year.

I sometimes think about how different our lives would be if my son had been born 25 or 30 years earlier. How much less we would have been able to teach him, and how much more limited his and our lives would have been without the benefit of applied research and subsequent practice that has slowly helped to transform my son and my family. We will always be challenged by my son’s autism, but never defeated.

My daughter Meredith and I have been having a contest over the last few years, each of us trying to get the other to admit the truth about Santa Claus. A few nights ago she asked me if Tyler “still believed?” I just couldn’t think of how to answer that question. Due to the nature and severity of his disability, there are some things we may never be able to teach our beloved child. I believe Santa Claus may come to Tyler’s home forever, and in a way, that will be a truly wonderful thing.

Suzanne Letso, M.A., BCBA, is the co-founder and CEO of the Connecticut Center for Child Development, and its subsidiary, the Institute for Educational Planning. Mrs. Letso currently serves as a member of OAR’s Scientific Council and President of the Connecticut Affiliate Chapter of the Association for Behavior Analysis. She has participated in the establishment and management of a number of other service organizations and autism-related initiatives during the last ten years. Mrs. Letso also provides consultative services to assist in the development, reorganization, and management of educational programs for individuals with disabilities, and training in organizational management, board development, and other related topics. She holds a Bachelor of Arts Degree in Elementary Education from Southern Connecticut State University and a Master of Arts Degree in Leadership from Duquesne University. An avid runner, she is a charter member of OAR’s RUN FOR AUTISM team.

OAR Announces 2004 Research Grant Winners

Two leading autism researchers will receive grants totaling $60,000 from OAR next month to begin studying ways to better assess problem behavior and improve social skills development. These two new studies bring the total amount of OAR’s grant awards to $120,000 over a period of 12 months.

Earlier this month, OAR’s Scientific Council recommended the two studies for funding to the Board of Directors. Three studies remain under consideration pending some modifications to their research design and methodology recommended by OAR after the review. The Scientific Council will reevaluate these proposals and make additional funding recommendations to the Board by the end of March.

The recipients of OAR’s 2004 research grants are Edward Carr, Ph.D., Leading Professor, Dept. of Psychology at the State University of New York at Stony Brook, and a group of researchers from the Yale Child Study Center, led by Lawrence Scahill, M.S.N., Ph.D. Each grant winner will receive $30,000. Their proposals were chosen from an initial group of 26 received by OAR in response to a Request for Proposals (RFP) issued last March. Eleven advanced to the final stage, where Carr’s and Scahill’s proposals came out on top.

Carr, who recently spoke at OAR’s Applied Autism Research and Intervention Conference last October, will conduct a study entitled, “Problem Behavior: The Development of a Contextual Assessment Inventory for Use by Families.“ His goal is to develop an efficient, user-friendly inventory that can be used to help families identify the full range of factors that are involved in a child’s problem behavior. Carr will develop a form called the Contextual Assessment Inventory (CAI), which will be used by parents to record information on their child.

Scahill’s proposal, entitled “Social Skills Development in Children with Autism Spectrum Disorders,” calls for a one-year pilot study to evaluate the acceptability and effectiveness of a social skills development program (SSDP) for children with ASD. The program’s goals are to increase social motivation and improve appropriate social behaviors in 30 children with ASD through intensive interaction with peers over a 12-week period. The study will be conducted at the Yale Child Study Center with fellow investigators, Kathleen Koenig, M.S.N., Karyn Bailey, M.S.W. and Fred Volkmar, M.D.

In the coming months The OARacle will have feature articles on each of these two studies. Please click here to read the study abstracts.

Florida Autism Leader Joins OAR’s Board

OAR is pleased to announce that longtime autism advocate Michael Guarino joined the Board of Directors this month. Guarino, who is a trained accountant and an entrepreneur, is the father of a 13-year-old daughter with autism named Brittany and a 5-year-old son, Michael. He brings over 10 years of non-profit leadership and autism experience at the local, state and national level to the Board.

Prior to joining OAR, Guarino served as the chairman of the Autism Society of America (ASA) Foundation, an ASA board member and treasurer and board member of the Center for Autism and Related Disabilities in Gainesville, Fla. He also served on the board of the Autism Society of Florida for several years and organized several events including a yearly golf tournament in his hometown, Weeki Wachee, Fla. and a one-week summer camp for children with autism in Switzerland, Fla.

After working on local and state autism activities for the last two years, Guarino decided he wanted to participate at the national level with OAR because of its research mission. “I wanted to work with an organization in which the highest percentage of money is going into research,” he said. “My goal is to help fund the most studies that will find the best treatment for autism.”

OAR Executive Director Mike Maloney welcomed the addition of Guarino. "Michael is a known quantity," said Maloney. "On the business side, he brings the experience we need to help manage OAR’s operations and the entrepreneurial spirit that matches ours. In terms of autism, he is a proven leader, advocate and dedicated parent. We are obviously delighted to bring Michael on board.”

Sandra Hemenway Kownacki and her daughter Amy

Community Representative Steps Down

As OAR’s Board welcomes a new addition, it also says farewell to Sandra Hemenway Kownacki, who will finish two years on the Board at the end of this month. For the past year, Kownacki served as OAR’s first Community Representative, a special position created by the Board of Directors in December 2002. In that capacity, she drew upon her many years of experience to provide valuable input on the concerns of parents in the autism community.

Kownacki, the mother of an adult woman with autism, was one of OAR’s seven founding Board members. She had considerable experience on the national level having previously served as president and member of the board of the Autism Society of America for 12 years, member of the ASA Foundation Board and president of the St. Louis chapter of the ASA. In Missouri, the retired elementary school teacher worked on state committees for developmental disability issues and is currently a parent policy partner, working to get services for families affected by developmental disabilities in Missouri.

Though she is leaving the board, Kownacki said she will keep supporting OAR and its mission. “OAR is one of the few organizations that funds research to help our kids,” she said. “We have an outstanding group on the board. That’s what I’ll miss the most.”

In framing the Community Representative’s role last year, OAR made it a fully participating Board position without a fundraising requirement and limited to a non-renewable, one-year term. “We wanted the person in this role to be free to concentrate on community issues,” said OAR Vice President, Madeline Millman, who came up with the idea. “The one-year term allows us to introduce new autism and community perspectives every year, which is very important with something as complex and diverse as autism.”

OAR is currently considering several candidates to follow Kownacki as the Community Representative. In general, OAR is looking to fill this position with a person with autism or interested parent or family member with an established record of service to the autism community. OAR expects the next Community Representative to play a key role in implementing its plans to establish a Community Council, an adjunct body that will advise the Board on all matters related to OAR’s communication and information programs. Please look for an announcement on the new Community Representative in coming issues of The OARacle.

Tenor Roy Angelicola and Lyric Soprano Annamaria Stefanelli

NJ Opera Event Raises Over $1,000 for OAR

Beautiful arias sung by leading opera singers attracted over a hundred attendees to the first annual Opera for Autism, an event organized by OAR Board Member Anthony Ferrera.

The Nov. 21 concert was held at the Mangia Bene Ristorante in Flemington, N.J. and raised over $1,000 for OAR. The event featured opera singers Annamaria Stefanelli, a lyric soprano, Roy Angelicola, a tenor, and accompanist Catherine Scott. A portion of the funds went to The Autism Autoimmunity Project (TAAP), a nonprofit group that supported the event and raises funds for independent research addressing immune and immunogenetic abnormalities in autism.

Ferrera, who has volunteered for the disability community for the past 20 years, plans to make it an annual event that will remain open to partners like TAAP. The father of a 3-year-old child with autism, he said the concert was oversold this year and the same turnout is expected next year. “Our affordable $40 ticket price allows parents, caregivers and therapists to attend the event,” he said.

Introducing the "OAR Salute" In this month’s issue of The OARacle, we introduce a new bi-monthly feature called our "OAR Salute." Each article will recognize an individual who has gone above and beyond for OAR. This month, we salute Aaron Steeves, the father of a 13-year-old son with autism and owner of Fastech Services in Sterling, Va., who has generously offered his technical expertise as well as Fastech’s computer and printing services to OAR. Aaron Steeves For Aaron Steeves, serving others comes easy. The 42-year-old father often helps customers at his Sterling, Va. all-service center for copying, faxing and computing take care of their printing needs. Now he is applying those services to help inform the autism community. Steeves remembers how he felt when his son Cameron, now 13, was diagnosed with autism eight years ago. Cameron was also diagnosed with multiple dystrophy and is now taught in a special education classroom. “At that time, there wasn’t much information out there for parents,” he explained. “I wanted to get involved in an organization that helped parents learn as much as they could.” Ever since OAR started, Steeves has participated in OAR fundraisers, serving on the committee for the golf tournament, printing flyers and brochures, and enlisting sponsors. He has also provided computers for OAR’s office at-cost, assisted with technology issues, installation and networking, and printed brochures on a pro bono basis for the RUN FOR AUTISM and other special events. “Aaron is one of those rare people whom you can call anytime and ask to do anything,” praises Mike Maloney, OAR’s Executive Director. “We met him at our first event two years ago, and he’s been there for us every time we’ve needed help since. There isn’t anyone more deserving of our first ‘OAR Salute.’” Steeves is proud of OAR’s accomplishments in raising research funds and autism awareness and is committed to helping further. “I plan on keeping myself available for whatever might come,” he explained. “I like what OAR does and am happy to help in some way. I’d like to see more people get involved.”

Resource

Considering Complementary Therapy for Your Child

Note to readers: In each issue of The OARacle, we provide a helpful resource on a topic of interest within the autism community. This month's article focuses on the use of complementary therapies in the autism community and considerations for parents in choosing a therapy. This article is provided as an information piece and is not an endorsement of any of the treatments mentioned. Special thanks to Peter Gerhardt, Ed.D., Chairperson of the Scientific Council for his contribution.

Peter Gerhardt, Ed.D.

Among the myriad treatments available to individuals with autism spectrum disorders (ASD) today, complementary or alternative therapies have gained a great deal of attention in recent years. According to a 1996 study¹, up to 50 percent of children with autism in the United States may receive some form of complementary and/or alternative medicine.

Complementary therapy generally refers to those interventions or treatments that differ from conventional treatments like applied behavior analysis or biomedical therapies; and may be used to complement these more traditional therapies. Complementary therapies have emerged as part of a growing assortment of treatments used for individuals across the autism spectrum. In fact, many families who have chosen to use complementary therapies see them as fun, motivational, and potentially helpful treatment approaches for their son or daughter with ASD. Despite the fact that little scientific evidence exists on the efficacy of these treatments, many parents and therapists attribute improvements in their child or patient to complementary therapies, such as those briefly described below.

Treatment Types
Some complementary treatments available to children with ASD include:

• Animal Therapy - treatments include horseback riding, also referred to as hippotherapy, which proponents claim draws on the multidimensional movement of the horse to help organize sensory input; and dolphin/dog/cat/bird-assisted therapy, a mode of treatment that purports to improves a child’s cognitive skills by “relaxing” the brain.
• Art Therapy - a complementary therapy that uses the artistic techniques of drawing, painting and modeling to, reportedly, help individuals enhance their cognitive, communication, and social/emotional skills through tactile and sensory stimulation.
• Auditory Integration Training - a series of auditory treatments, which are designed to normalize hearing in individuals who, it is hypothesized, experience distortions in hearing or who may be hypersensitive to sounds.
• Cranial Sacral Therapy - a non-invasive massage technique based on a belief in a person’s innate ability to heal him/herself through the use of specific massage techniques focused on the head and spine. Proponents claim this then allows for the release of tension and the dissolution of energy blocks.
• Music therapy - a therapy often used to help children with motor, speech and fluency problems, the therapy uses music to increase behavioral, social, psychological, communicative, physical, sensory-motor, and/or cognitive functioning.
• Play therapy - a therapy that introduces the elements of play and develops and extends the variety of play activities intended to increase a child’s cognitive abilities, language development and social skills.
• Vision Therapy - treatments include the Irlen Method which, according to supporters, addresses a type of visual-perceptual processing problem related to sensitivity to lights, glare, patterns, colors, and contrast through the use of colored filters worn as glasses to reduce or eliminate perceptual sensitivity and sensory overload.

Evaluate Treatments
In considering any complementary therapy for a child with ASD, parents should first gather as much information about the treatment as possible in order to make an informed decision. Given the lack of supporting scientific research in most cases involving these therapies, parents should seek information and opinions on particular treatments and therapies from fellow mothers and fathers, health care providers and autism groups.

Parents should also discuss any complementary therapies they are considering with their child’s current therapists and treatment professionals. The therapists may know about the therapy and be able to advise parents on its safety, use, and effectiveness. Then, working as a team, parents and therapists should talk about the areas of a child’s development an additional therapy might improve. It’s important that parents’ inquiries go beyond the therapies to include evaluation and careful scrutiny of complementary therapy facilities before beginning any program.

Professional organizations associated with the type of therapy parents are seeking for their child are another possible source of reliable information. Their staff may be able to help explain the treatment and offer information on the type of training required by a treatment provider, treatment guidelines, and, perhaps, a list of best practices or certified providers. At the minimum, the organization may provide a listing of therapists in the local area or state for parents to contact.

Prepare a List of Questions
After selecting a therapy, parents should begin contacting therapists to gain further information about the therapy and the facility’s philosophy toward treating children with autism. They should begin by asking for a brief consultation in person or by phone with the therapy provider. The discussion will offer a chance for parents to ask a list of questions about the therapy.

To begin with, parents should inquire how much experience and success the provider has had treating children with autism at the facility and whether their experience includes having treated clients with symptoms similar to their child’s. They should also ask if the provider believes the therapy can effectively address the child’s condition and further inquire about any research supporting the treatment's use for the child.

Some of the other questions parents should ask are:

• What benefits can we expect from this therapy?
• Are there any risks associated with this therapy?
• Could the therapy interact favorably or unfavorably with conventional treatments?
• Will the therapy interfere with any of the child’s daily treatments/activities?
• How long will the child need to undergo treatment? How often will his/her progress or plan of treatment be assessed?
• How is progress measured?
• What type of equipment or supplies is needed, and what will they cost?
• Are there any conditions for which this treatment should not be used?

In order to prepare their son or daughter for any therapy ultimately chosen, parents should inquire about what will happen during the child’s initial visit. After each of the first few visits, moms and dads should evaluate their child’s comfort level with the therapy and talk with the provider to gauge the child’s progress. If they are not satisfied or comfortable with the treatment, parents should discuss modifications or pursue different options for the therapy. If they decide to discontinue the treatment, mothers and fathers should share the information with the child’s other treatment providers in order to help them make decisions about their child’s instruction.

In conclusion, complementary therapies, despite many testimonials to their efficacy, are largely unproven in scientific terms. Although anecdotal reports may abound, anecdotal reports are not proof of efficacy. Taking the time to do your homework and selecting the right therapy and provider are key to ensuring children receive sound treatment. The selection process will be most effective if parents fully consider their child's strengths and needs. Unfortunately, it is most often left to parents to do the research and draw conclusions about the effectiveness of a therapy.

For all individuals with ASD, it is important to remember that comprehensive, socially valid and research-supported educational methods lie at the center of any effective package of interventions. Beyond that, there are multiple complementary therapies that parents may want to research, evaluate and ultimately consider using with their child. If parents proceed, they should do so wisely, armed with information, and with due caution.

1. Nickel, R.E. Controversial therapies for young children with developmental disabilities. Infants Young Child. 1996;8:29-40

Peter Gerhardt, Ed. D., is a consultant whose private practice is based in Baltimore, MD. He is the author or co-author of articles and book chapters on the needs of adults with autism spectrum disorder, the school-to-work-transition process and analysis and intervention of problematic behavior. He has presented nationally and internationally on these topics. He currently serves on numerous professional advisory boards and is the Chairperson of the Scientific Council of the Organization for Autism Research (OAR,) along with serving on the Board of Directors of GRASP. He co-founded the Douglass Group, a social skills and support service for adults with Asperger Syndrome or High Functioning Autism. Dr. Gerhardt received his doctorate from the Rutgers University Graduate School of Education.

Events

Colorado Run/Walk for Autism
Louisville, Montrose and Castle Rock, Colo.
Saturday, April 3, 17, and 24, 2004

Help support autism awareness efforts at the fourth annual WAFF WALK. Last year, the Walk was a one-day event; this year the 5K race and 1-mile fun run/walk will be held in three separate cities throughout April, which is Autism Awareness Month. Starting in Louisville on April 3, the WAFF WALK will move on to Montrose on April 17 and culminate in Castle Rock, the home of the original walk, on April 24.

Funds from the events will go to local programs, national advocacy, and autism research. The gross revenues from last year’s run/walk broke the $100,000 mark. OAR received over $21,000.

Race participants will be able to create their own websites for fundraising and special team registrations will be available this year for interested groups. In addition to race participants, the WAFF WALK organizers are seeking volunteers to help in each city. For more information, contact Kim Anderson, WAFF WALK Administrator, at (303) 688-1995.

Capital Autism Golf Classic 2004
The Piedmont Club, Haymarket, VA
Monday, April 26, 2004

Mark your calendars for April 26, 2004, and please join us for the Capital Autism Golf Classic at the Piedmont Club, one of the best-conditioned courses in Northern Virginia. The course is located in the heart of Virginia’s Civil War country and was created by famed golf designer Tom Fazio, known for designing golf courses with generous fairways and medium-sized subtle greens. Reserve a spot at this all-day event where you’ll play a challenging course, compete for team and individual prizes and support a worthy cause. Proceeds from the event will support research and information programs that will provide practical answers to individuals with autism and their families.

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

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

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

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

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