President's Message: Raising the Bar

President Peter Gerhardt

Raising the Bar

With 2008 now upon us, I first want to wish all of you a happy, healthy, and prosperous New Year and thank you for all you have done in support of the Organization for Autism Research (OAR) throughout the past year. For OAR, 2007 was our most successful year yet in terms of funds raised, research funded, studies published, and the dissemination of evidence-based information to individuals and families across the country and, yes, across the globe. While significant, what is even more significant is how much one year’s success raises the bar for the next year, especially for OAR and in the area of scientific research.

The exciting reports describing the breakthrough related to chromosome 16 are a case in point. On one hand, it is indeed a very important step toward understanding autism, and the researchers who contributed to the discovery deserve the accolades that accompany such scientific accomplishment.

On the other hand, for parents and families touched by autism, what do this study and its results translate to today?  Other than the very real reassurance that comes with knowing research is progressing and the sense of hope that endures as a result, they offer little. The lives of parents and their children with autism remain unchanged. As exciting as the study’s results may be among scientists, its findings cannot yet be practically applied.

Thus, while these recent research findings may lead to a monumental breakthrough one day, that day is still in the future, and no one knows that better than the research team. As energized and proud as the team may be of its latest success, I’m sure that, much like OAR and many others working in the area of autism research, they know there is much more to be learned and are right back at it working to take their discovery even further.

At its core, OAR is an applied autism research organization; so, in 2008, as in each of the past six years, its focus is on research and resources related to the daily challenges of autism. In pursuit of that mission, the annual Applied Autism Research Competition takes center stage. And with the posting of two 2008 Request for Proposals (RFPs) on OAR’s Web site in June of last year, that process is well underway.

The annual research competitions--the Applied Autism Research Competition and the Graduate Research Grants Program--consistently generate a high level of interest among some of the field’s best researchers and clinicians, both nationally and internationally. While the growing response makes the grant review process a bit challenging (it’s not unusual for funding decisions to come down to “degrees” of excellence between two proposals), it increases the competition and the rigor of the review process. Thus, it further helps ensure that OAR funds only the very best proposals.

I expect that OAR will easily surpass last year’s record funding level of over $430,000 in applied research when this year’s competitions are complete. As I said, the bar moves higher. 

OAR’s mission does not stop with just funding solid research. OAR is equally committed to translating research outcomes into evidence-based protocols and, subsequently and most importantly, making them accessible to those who have the greatest potential to impact the lives of individuals with ASD, i.e., parents, teachers, and other direct-care professionals. One way OAR accomplishes this is through its annual Applied Autism Research and Intervention Conference, a two-day forum on current autism research and evidence-based intervention.

This year’s conference, the sixth, will take place on October 24 and 25 at the Westin Arlington Gateway in Arlington, VA. OAR has already received acceptances for its three keynote presentations from nationally prominent and highly regarded speakers: Dr. Ami Klin from the Yale Child Study Center; Dr. Joanne Gerenser from the Eden II programs in Staten Island, NY; and Dr. Roy Richard Grinker, author of the book Unstrange Minds: Remapping the World of Autism.

Approximately 200 parents and professionals attended last year’s conference and gave it very high marks in their conference evaluations. Blending their suggestions with the conference’s proven format, the conference tracks on Friday will focus on “OAR Sponsored Research” and “Research into Effective Practice.”  Saturday’s tracks will be “Social Skills/Adaptive Behavior” and “Life Outside the Classroom.”  OAR is setting its sights high, aiming to attract no fewer than 300 attendees for this year’s conference. As before, the bar moves higher.

In June 2006, OAR hosted its first Autism Research Convocation, focusing on the needs of adolescents and adults with autism. This June, OAR will convene its second Convocation, this time with a major autism community partner, the Marcus Institute, in Atlanta, GA. The focus of this year’s Convocation is “Research into Effective Intervention in Social Competence and Adaptive Behavior.” The Convocation format brings together a cadre of prominent researchers and service providers to:

 1) Review the most current research
 2) Discuss the relevant implications of the findings and identify any critical gaps
 3) Offer recommendations for current practice and future research
 4) Make these findings readily available

Through this effort, OAR and the Marcus Institute intend to help set the research and practice agenda in this area for the next decade. Once again, the bar moves higher.

If what I’ve described is not enough, OAR plans even more:

• The development and publication of at least two new volumes in OAR’s highly regarded Life Journey through Autism series of community-friendly resource guides, in addition to the soon to be released Parent’s Guide to Assessment
• The second year of OAR’s Schwallie Family Scholarship awards
• The completion and distribution of an instructional DVD for college students with Asperger Syndrome
• The continuing partnership between OAR and the Autism Society of Southeast Wisconsin to provide a series of autism-specific Grand Rounds designed to directly educate physicians and featuring noted autism professionals
• A potential major program initiative and research study in the provision of effective family support and respitehe bar moves even higher.
  
  The bar moves even higher.

So, again, Happy New Year. Looking back at my list brings two immediate and opposing reactions. The first is, “We must be crazy!”  That shiver of anxiety quickly gives way to the quiet confidence that comes from being part of OAR for six years now. When we take something on, no matter how imposing it seems at first, it somehow ends up on our list of “completed actions” by the end of the year. I don’t always know how that happens, other than knowing that OAR’s Board, Scientific Council, staff, supporters, and the persons and families OAR supports have come to expect no less. That works for OAR and me.

Now that you know just how high OAR has set the bar for the coming year, I hope you will join us and continue to offer your support through your input, time, conference attendance, and, of course, your donations. Raise Money. Fund Research. Change Lives. I can’t wait to see what 2009 is going to bring.

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Grand Rounds Anchor Innovative Collaboration in Wisconsin

Early in 2007, OAR received a generous grant from the Autism Society of Southeast Wisconsin to promote applied autism research and education in the greater Milwaukee area. The grant itself was the result of the Autism Society of Southeast Wisconsin’s highly successful annual fundraiser, Dylan’s Run to Indian Summer Festival.

Dylan, a 10-year-old boy whose family lives in the Milwaukee area, likes to swim and hike, and has autism. Diagnosed with autism at the age of two, Dylan has made and continues to make great strides, with the help of support groups such as the Autism Society, ABA therapy, and medical intervention. Dylan’s family organized the first run in 2001 in order to raise awareness about autism and generate funds to support research into the cause and treatment of the disability.

The Autism Society of Southeast Wisconsin chose OAR as a beneficiary because of OAR’ emphasis on applied research. “This money was raised mostly by families who have a child with autism,” says Dawn Schwartz, the chair of Dylan’s Run (and Dylan’s mom). “We wanted to donate money to an organization that can help children now, not in the distant future.”

OAR and the Autism Society of Southeast Wisconsin discussed a number of options for how to use the grant, including a Wisconsin-only Applied Autism Research Competition and a one-day conference featuring OAR-sponsored researchers and members of the Scientific Council.  Then Emily Levine, executive director of the Autism Society of Southeastern Wisconsin, suggested doing something that would attract physicians and provide them with the latest in autism research and knowledge. “We know from phone calls we get at our office that many families have difficulty finding physicians knowledgeable about autism and Asperger Syndrome,” Levine says. “We have done many conferences for educators and families, but we have not had participation by many medical professionals.”

As a result, the group decided to bring speakers to Milwaukee to speak to residents and medical professionals at the Milwaukee medical complex that includes the Medical College, Froedtert Hospital, and Children’s Hospital of Wisconsin. Thanks to the invaluable support of Dr. Richard Barthel, child psychiatrist and assistant professor of psychiatry and behavioral medicine at the Medical College of Wisconsin (MCW), OAR, the Autism Society of Southeastern Wisconsin, and MCW agreed to create a series of presentations on autism at MCW Grand Rounds.

Grand Rounds are a formal meeting at which physicians discuss the clinical case of one or more patients or a particular topic of clinical relevance (in this case, autism). Grand rounds today are considered an integral component of a physician’s continuing medical education.

The first Autism Grand Rounds were held on December 4 and 5, 2007, with OAR Scientific Council Member and internationally recognized authority Luke Tsai, MD, FAACAP. On the first day, Dr. Tsai presented Grand Rounds to child psychiatry residents and faculty on the topic of “Asperger Disorder and Bipolar Mood Disorder” followed the next day with Grand Rounds for psychiatry residents and faculty on “Adult Outcomes in Autism Spectrum Disorders.”  Both Grand Rounds were videotaped and, after editing, will be made available through both OAR and the Autism Society of Southeastern Wisconsin.

The next event in this series is scheduled for November 21, 2008, thanks again to the continued support of Dr. Barthel. Dr. Deborah Fein, Board of Trustees Distinguished Professor of Psychology at the University of Connecticut and co-author of the Modified Checklist for Autism in Toddlers (M-CHAT) will speak to residents, faculty, and fellows on the importance of early screening for autism and the recent recommendation by the American Academy of Pediatrics that all infants be screened for autism at least twice by the age of two.

“We are grateful to OAR and the Medical College of Wisconsin for helping us to get current information about autism spectrum disorders directly to medical professionals,” says Levine. “This partnership will directly benefit families in our area who participated in Dylan’s Run by increasing the knowledge base of those providing care to their children. With OAR’s help, we are reaching a new audience.”

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OAR's Latino Outreach Efforts Win Autism Speaks’ Support

The Latino community is the fastest growing population in the United States today. Recognizing that, as well as the fact that Latinos are an underserved population with respect to developmental disabilities, OAR introduced a Latino Outreach Initiative last year. In an effort to support the needs of Latino families touched by autism, OAR took its first steps to inform and educate new and prospective Latino parents by providing quality, evidence-based, and culturally adapted resources in Spanish during a Latino community health fair in greater Atlanta, GA, last August.

The program moved forward with two major program developments last month. First, OAR successfully borrowed from the model it developed and tested in Atlanta when it participated in Telemundo Washington DC’s La Feria de la Familia, on December 16. Then, at just about the same time, OAR learned that Autism Speaks had awarded a $20,000 Family Services Community Grant to OAR to underwrite the costs of translating the guidebooks in OAR’s Life Journey through Autism series to Spanish. Each represents an important component of a broader, more comprehensive outreach effort to this population.

La Feria de la Familia is the Capital Region's first and largest expo for Latino families. Attendees have the opportunity to enjoy a fun-filled day of family entertainment, games, and prizes while learning about the services provided by more than 100 of the region's business and organizations, all at no cost. This was the first year OAR or any autism organization participated. Volunteers Cynthia Valdez and Carmen Noonan, both fluent in Spanish and mothers of children with autism, joined OAR Executive Director Mike Maloney for the Expo.

In the course of the six-hour event, more than 10,000 people came through the DC Armory where the Feria took place. Many, particularly parents with young children, visited OAR’s exhibit to receive information about early childhood developmental milestones and the warning signs of autism. Thanks to Valdez’s and Noonan’s language proficiency and personal knowledge of autism and OAR, OAR’s outreach this day was particularly effective.

“The spirit and interpersonal dynamic of these events are remarkable,” says Maloney. “From the moment either Cynthia or Carmen said, “Hola. Tienes usted un niño?” the connection was immediate and their conversations often ended with a warm hug of appreciation.”

Filling the Gaps
One of the gaps OAR identified during both its Georgia and DC outreach efforts was the general lack of printed information in Spanish. As OAR staff researched the problem, they quickly realized that there was more to it than merely translating resources from English to Spanish.

Understanding the culture and demographics and knowing how to reach people are crucial. The majority of Latinos do not have access to Web-based resources; therefore, hard copy and print materials in Spanish are essential to effective outreach.

To that end, OAR submitted a grant proposal to Autism Speaks’ Family Services Community Grants program seeking funds to translate OAR’s Life Journey through Autism resource publications into Spanish and, in the process, carefully adapt and properly target the content. To OAR’s great delight, Autism Speaks selected it for funding.

This project is a first step toward addressing the Latino community’s need for proven, reliable, evidence-based, culturally adapted information about autism in Spanish. Specifically, it will address the informational needs of parents of children with autism and Asperger Syndrome, teachers, and a range of related service providers in the areas of K-12 education and transition to adulthood.

Armed with this improved understanding, those parents will be able to work more cohesively with the teachers and autism professionals in their children’s lives, which will result in more focused treatment, more complete support plans, and enhanced quality of life for Latino children and adults with autism and their families.

OAR has already begun the translation and adaptation process and expects to have 2,000 copies of each of its four resources guides available in Spanish in hard copy and online by March 1. OAR will begin to accept online requests for copies beginning February 15, or by e-mail to guides@researchautism.com beginning today.

For more information on OAR’s Latino Outreach Initiative and OAR’s Spanish language resource materials, please contact Mike Maloney via info@researchautism.org.

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Education Series:
How a Big Fat Binder is Changing Disability Awareness Education in One School System

“What we didn’t want,” says Linda Carter-Ferrier, President of the Anne Arundel County Chapter of the Autism Society of America, “was just another disability awareness day.” “We” refers to a planning team made up of school system representatives, educators from a private school for children with disabilities, and community representatives, including Carter-Ferrier, all in Anne Arundel County, MD, outside of Baltimore and Washington, DC.

What the planning team eventually created, with the help of many others, was a comprehensive program for educators, administrators, and students about autism, now called Building Bridges: A Multi-Disciplinary Autism Awareness and Education Program. The program was piloted in the 2006-2007 school year and is in full use across the Anne Arundel Public School System.

The introduction describes the program as “designed to be implemented for all grade groups (elementary, middle, and high school) and to be used by a variety of school personnel (guidance counselor, special educator, general educator, etc.) and with a variety of audiences (whole school, grade group, grade team, individual class, etc.).”

What it looks like, Carter-Ferrier says with a laugh, is a big fat binder plus supplementary materials that include books and videos. The materials cover language needs, social skills lesson plans, friendship and empathy trainings, social skills group outlines, sensory needs, and permission slips. The supplementary materials include two of OAR’s Life Journey through Autism series, An Educator’s Guide to Autism and An Educator’s Guide to Asperger Syndrome.

It was critical, says Carter-Ferrier, that the program be the kind of resource that was available when needed. “A teacher might need it on Monday when he doesn’t know what is going on with a kid in his classroom or a guidance counselor may want to use it with a student who has been disrespectful to a student with an autism spectrum disorder on Thursday. If a team of educators is in a meeting, the program is easily accessible and provides ideas for activities and answers to questions educators may have.”

The Necessary Spark

Over her years as president of the chapter, she would often receive calls asking her to come and do something at a school about autism awareness or to help create a single program for a single school for an autism awareness day. “It was not systemic, it was not built in, and it was completely random,” she says.

When she met with the school superintendent and he asked her what the school system could do for students with disabilities, Carter-Ferrier’s first thought was that she had just gotten everything she could possibly ever want for Christmas.

The next day, she got a call from the assistant superintendent and then from the director of special education. “There was common knowledge that the school system needed something but doing something about it required a spark. Once we had the spark, we ran with it.”

They put together a planning team that included several key people from the school system, including the director of special education, the out-of-home-school placements coordinator, a guidance counselor, and the nonpublic placement specialist. Several key staff members from the Hannah More School, a private school for children with disabilities in Reisterstown, MD, were also part of the planning team, including the director of Hannah More Type II Autism Programs, and a teacher assistant and social worker from the Hannah Moore partnership programs. In addition, the chairman of the Anne Arundel County Special Education Citizens Advisory Committee and Carter-Ferrier were part of the team.

The overall goal of the planning team is to create a systemic comprehensive program for all children with disabilities. They see this program as the first step in the process, Carter-Ferrier explains.

Building Bridges has been designed and implemented to accomplish three goals:

• Providing a means for peers to be able to reach out and connect with students with autism spectrum disorders (ASD)

• Supporting educators’ needs to understand ASD, which will then lead to enhanced interactions with and instruction of students with ASD

• Providing information and tools for educators to provide explicit instruction in social skills for students with ASD, along with integrated opportunities throughout the day in the school environment to promote social competence and successful interactions and relationship development with peers

Putting It To Work

Once the binder was created, the school system initiated a series of “train the trainer” sessions to train core staff in the central office, division of special education. Those trainers then led a series of trainings for all the key people in the individual schools, including school psychologists, speech and language pathologists, occupational therapists, and guidance counselors. Next, the lead educators in each school attended a training and provided training for the educators in their schools. The training sessions lasted from two to three hours, concentrated on showing how the materials in the binder can be used.

Carter-Ferrier says that one of the biggest pluses of Building Bridges is that it breaks down walls within the school system and the schools themselves. “Now, everyone in the building can work with the kids on issues related to autism.” For example, a teacher may notice that a child isn’t diagnosed with autism or any learning

disability but she sees signs that the child is having difficulty with social skills, which she recognizes because of Building Bridges. She then sends the child to the guidance counselor, who sets up some sessions for the child to work on social skills, which the counselor got from the program.

“The program is teacher-friendly, user-friendly, implementer-friendly. Anyone can present lessons. A multitude of types of educators could provide any particular lesson or lessons. The program is as flexible as we could possibly make it. Our goal was for no one to say, ‘Oh, we can’t do that.’”

Full Speed Ahead

Carter-Ferrier notes that the team has not yet received a full analysis of the program’s pilot year, but anecdotal reports are positive. “It’s still a ‘living’ program,” she says. “If someone has an idea for social skills lessons, he can bring it to the lead implementer and she can decide whether to add it to the program.” People have also come to her and pointed out missing components. “Some of the speech and language therapists looked at what we initially gave them and told us there was nothing that they could use. So our lead implementer wrote a new section for them.”

The program was implemented school system-wide in the 2007-2008 school year, Carter-Ferrier explained. As more and more people use it, more is being added and existing content is being refned. At the end of the school year, the school system is planning to release the program for use by other school systems along with a report that details Anne Arundel's success with the program.

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News from OAR

First Schwallie Family Scholarship Winners and Dr. Gerhardt Honored

The first cycle in OAR’s Schwallie Family Scholarship program came to an exciting finale on December 9, 2007, when OAR formally recognized the first winners at the annual GRASP Award Dinner, sponsored by the Global and Regional Asperger Syndrome Partnership (GRASP), at Arno’s Restaurant in New York City.

As parents and friends of the scholarship recipients and GRASP dinner guests looked on, OAR Board member and Scholarship Committee Chair Lori Lapin Jones took time to describe the review process, the quality of each of the 85 applicants, and the great challenge the committee had in narrowing the list down to just three.

She then announced each winner individually, saying a few words about each before they came forward to receive their scholarship certificates and checks for $3,000 each.

Meaghan Flemming Buck, winner in the four-year college category, is from Atco, NJ, and currently attends Lebanon Valley College in Pennsylvania, pursuing her goal to become a special education teacher. As Meaghan explained in her essay, her experiences in special education settings “persuaded me to pursue a degree in elementary education and special education in the hope that I might continue to improve the lives of those diagnosed with autism.”

Alexander Smoot, who received the scholarship in the vocational, technical, or trade school category, lives in Forest Hill, MD, and attends the Lincoln Technical Institute, also in Maryland. Alex discovered his passion for auto mechanics while working on his first car, a 1995 Jeep Cherokee. Combining his love of helping people with his enthusiasm for cars, the automotive field was an ideal personal and professional fit.

Luke Ross, the recipient in the two-year college scholarship category, is from Raynham, MA, and attends the University of Maine where he is studying forestry and psychology. His interest in the outdoors and conservation began early when, at only 10 years of age, he was appointed to the Town of Raynham Recycling Committee. He has since continued that interest through an internship with the National Park Service and his college studies. Aside from that passion, Luke’s personal interests include both music and sports, especially the Boston Red Sox.

Congratulations again to Meaghan, Luke, and Alexander!

OAR introduced the Schwallie Scholarship Program in September 2007, and immediately invited applications from individuals with an autism spectrum disorder pursuing post-secondary undergraduate degrees or certification via trade schools or technical and vocational training programs. The brainchild of OAR Board member Ed Schwallie and his wife, Marge, the program was funded through the generous support of their family foundation.

Their son, Tom, played a key role in developing the program scope, along with Peter Gerhardt, Ed.D., and subsequently served as a member of the Scholarship Review Committee. Michael John Carley, executive director of GRASP, also served on the committee along with Jones.

In addition to celebrating  the academic and personal successes of the scholarship recipients, OAR brought home a new trophy as OAR’s own Dr. Gerhardt received GRASP’s DNA Award (Divine Neurotypical Award). This well-attended event allowed Buck, Ross, Smoot, and Dr. Gerhardt to celebrate their accomplishments with friends and family members and enjoy good food, good company, and a surprise at the end of the evening.

As the evening rolled toward a close, Mike Maloney, OAR’s executive director, took to the podium to say a few words about Dr. Gerhardt. He paused for a moment to announce that, due to a generous gift from the Brian and Patricia Kelly Foundation, the awards for each of the evening’s scholarship winners would carry through for the remaining period of study upon which the Schwallie Family Scholarship was based. Needless to say, a loud round of applause and few shocked faces among the scholarship winners and their families greeted this announcement.

Buck summed up the scholarship and the evening in a thank-you letter she sent after the event. “For once in my life I felt as if I were at home at a reception!  [OAR] not only took the time to recognize the essay that I took the time to write, I could tell that you actually understood me as a person on the spectrum.

“When I walked up to the platform to receive my award, I felt proud. When I turned around and looked at the people recognizing all the hardships I have been through, I felt tears in my eyes.”

OAR Increases Autism Awareness at the NBC4 Health and Fitness Expo

OAR Staff at the Expo (from left to right) Mike Maloney, Alyssa Napolitano, Jerry Engel, and Doug Marocco

The start of the New Year is a good time to take stock of one’s health. For the first time, OAR joined more than 200 businesses and nonprofit organizations at the Washington, DC, Convention Center on January 12-13 at the NBC4 (WRC-TV) Health and Fitness Expo, the largest free health event in the country, in an effort to increase awareness for autism.

During two days, 85,000 attendees took advantage of the free cholesterol, blood pressure, glucose, vision, and other health tests and screenings. They found new inspiration while checking out fitness demos and new exercise routines as they work toward a new passport to health. Many stopped by OAR’s booth.

OAR staff members and volunteers had a great time at the Expo, speaking to visitors, passing out brochures, and helping increase autism awareness among the attendees. The staff team was also struck by the personal stories of a surprisingly large number of families with children somewhere along the autism spectrum who visited the display and signed up to receive information and copies of publications in OAR’s Life Journey through Autism series.

OAR staff members even managed to sign up a few prospects for the RUN FOR AUTISM. In an effort to promote the RUN FOR AUTISM, OAR sponsored a mile-long hike around the walking track for an hour on Saturday. Some 70 participants received a congratulatory certificate of completion and an autism t-shirt.

President Peter Gerhardt distributing T-shirts at the Walking track on Saturday

Participants included friends of OAR volunteers and previous runners, among them Kathy and Andy Off, Claudia and Steve Wolfson, Cynthia Campbell, the Pearson family and more. Thank you all! The event of the day was witnessing Executive Director Mike Maloney and President Peter Gerhardt, Ed.D., complete the hike in what Expo records indicate is “record time.”

OAR had a great media outreach campaign was highlighted by an on-air television interview with Maloney that played on Sunday’s and Monday’s NBC 4 evening news.

Greg Smith, a member of OAR’s Board of Directors, who attended Sunday along with his wife, Cheryl, and daughter, Quinn, commented, “This was a very good experience for OAR. Through events and outreach efforts like the NBC4 Health and Fitness Expo, OAR continues to lay the groundwork for its ultimate purposes, to ‘Raise Money, Fund Research, Change Lives.’”

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Research Review: Healthcare for Learners on the Spectrum

by Peter Gerhardt, Ed.D.

Not surprisingly, the communication and social skills challenges associated with an autism spectrum disorder diagnosis can pose major challenges to raising a healthy child on the spectrum (Volkmar & Wiesner, 2004). With both rising healthcare costs and the increased prevalence of autism as a diagnosis, this is an issue with significant implications for individuals and their families as well as for society at large. The three article reviews this month focus on the issue of healthcare for learners on the spectrum, specifically on rising costs, issues related to psychiatric hospitalization, and parental satisfaction with their primary care physicians.

Healthcare Expenditures Associated with Autism Spectrum Disorders

While there is general agreement that there has been an increase in the prevalence of autism spectrum disorders (ASDs) over the past decades, little is known about the associated healthcare costs for this particular group of individuals. Leslie and Martin note that an understanding of these costs is critical in that it should 1) lead to a more efficient allocation of healthcare resources, 2) support appropriate financing of healthcare services for individuals on the spectrum, and 3) lead to the development of long-term policy priorities.

To that end, the authors collected data from the 2000-2004 Thomson/Medstat Market-Scan database on 256,646 individuals, 17 years of age or younger, who had a mental disorder  (Thomson/Medstat compiles claims information from the private health insurance plans of large employers.) Inpatient and outpatient expenditures were then assigned to one of 11 diagnostic groups that included autism and “other ASDs” for a total of 9,506 individuals on the spectrum. The authors found that “healthcare expenditures associated with autism were high relative to other mental health conditions and increased steadily over time” (p. 354). Specifically, average healthcare expenditures, even when adjusted for inflation, increased 20.4 percent from $4,965 in 2000 to $5,979 in 2004.

Leslie and Martin note that there are limitations to this study, including the absence of individuals whose primary medical insurance is Medicaid (an important consideration) and the fact that they did not assess out-of-pocket costs which, for many families, may be significant.

Nevertheless, the findings represent an important step toward the development of “public policies that can fill the gaps between the fragmented system of care of individuals with ASDs and ultimately reduce financial risk for families and ensure their access to timely services” (p. 354).

Leslie, D.L., & Martin, A. (2007). Healthcare expenditures associated with autism spectrum disorders. Archives of Pediatric and Adolescent Medicine, 161, 350-355.

Psychiatric Hospitalization Among Children with Autism Spectrum Disorders

The goal of this study by David Mandell was to assess the frequency of psychiatric hospitalizations among children with an ASD diagnosis and the risk of hospitalization associated with certain clinical and demographic characteristics. Previous research has indicated that children on the spectrum are at greater risk for psychiatric hospitalization than children with other disorders and have five times the Medicaid-reimbursed expenditures for inpatient psychiatric care than do children with mental retardation/intellectual disabilities and 20 times that of children with other psychiatric diagnoses.

While Mandell notes that hospitalization may be necessary in some cases, its use may also represent a failure to provide appropriate community-based care to this complex group of individuals.

For this investigation, 1,207 parents in Pennsylvania responded to a request to complete an online or mail survey designed to measure the quality and quantity of such services from the time developmental concerns were first noted until present. Of this group, 760 surveys were deemed usable with 93 percent of them being completed by parents and the remainder completed by a non-parent legal guardian.

Of the sample, 10.8 percent reported at least one psychiatric hospitalization for their children and the results indicated that the risk of hospitalization increased over time. On average, hospitalized youth were more likely to be African-American, to display aggression or self injury, and have been diagnosed with a variety of other disorders (e.g., ADHD, depression, mental retardation, and obsessive-compulsive disorder). In addition, hospitalized youth received an ASD diagnosis 1.6 years later than non-hospitalized youth and were less likely to have used early intervention services.

On this point, the author notes that these results could reflect the negative impact the lack of intervention may have on child behavior and on the development, by parents, of the skills necessary for addressing problem behaviors.

As with all such investigations, there are some limitations to the generalization of these findings, which are discussed by the author. However, the results do help identify some potential points of intervention which, if taken advantage of, may help to reduce the rate of psychiatric hospitalization among children with ASD.

Mandell, D.S., (2007). Psychiatric hospitalization among children with autism spectrum disorders. Journal of Autism and Developmental Disorders. Available online at http://www.springerlink.com/content/617wg53902050342/?p=fd7de23bb7e84a49befba160c1303fc2&pi=4.

Satisfaction with Primary Healthcare Received by Families of Children with Developmental Disabilities

Patient satisfaction has long been regarded as an important measure of quality of care. In this investigation, Liptak and colleagues surveyed parents of children with autism, mental retardation, or a physical disability (spina bifida or cerebral palsy) in the Rochester, NY, area as to their satisfaction with the quality of care offered by their primary care physicians.

The survey consisted of three parts: 1) demographic information, 2) the Multidimensional Assessment of Parental Satisfaction (MAPS) for Children with Special Needs, and 3) general questions regarding healthcare to assess baseline attitudes toward physicians in general. A section for handwritten comments was also included as part of the survey. A total of 121 surveys were returned, representing 41 children with autism, 36 children with mental retardation and 44 children with a physical disability. The mean age of the children involved in the survey was 6.9 years.

The results indicated that parents of children with autism, when compared to parents from the other two groups, rated their primary care physicians lower on their physician’s ability to answer questions regarding their children’s disabilities and their ability to understand how having a child with such a disability affects the family as a whole. Further, parents of children with autism rated their primary care physicians lower on their qualifications to work with their children and, not surprisingly, on their knowledge of complementary or alternative medicine (a topic of great interest to a number of families of children with autism).

There are several limitations to the interpretation of these results (including the use of a convenience sample) and they would, therefore, benefit from replication (perhaps across a much broader geographic area and with attention to potential differences within the autism spectrum).

However, given the critical role that patient satisfaction (in this case, parent satisfaction) plays in the determination of quality of care, the results do indicate a number of potential areas of intervention that, if addressed, may result in direct benefit to all involved in caring for the health and wellbeing of individuals with autism.

Liptak, G.S., Orlando, M., Yingling, J.T., Theurer-Kaufman, K.L., Malay, D.P., Tompkins, L.A., & Flynn, J.R. (2006). Satisfaction with primary healthcare received by families of children with developmental disabilities. Journal of Pediatric Healthcare, 20, 245-252.

Volkmar, F.R., & Wiesner, L.A., (2004). Healthcare for Children on the Autism Spectrum. Bethesda, MD: Woodbine House.

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Future Direction of Evidence-based Psychopharmacotherapy in Individuals with Autism Spectrum Disorder

by Luke Y. Tsai, M.D., FAACAP

Luke Tsai, M.D. is a professor of psychiatry and pediatrics, and the director of the Developmental Disorders Clinic at the University of Michigan. A member of OAR’s Scientific Council, Dr. Tsai is a scholar, a researcher, a teacher, and a friend of individuals with autism and related disorders. His publications include more than 80 articles and 35 books or chapters. His research interest includes: diagnosis and classification of Pervasive Developmental Disorders, genetic, neuroimaging, and psychopharmacological studies of developmental disorders including autistic and Asperger disorders.

Introduction

It is clear that pervasive developmental disorders (PDDs) (autism spectrum disorder, ASD) have neurobiological etiologies. At present, however, no specific biological markers have been identified as the causes of PDDs that include autistic disorders, Asperger Syndrome, Rett’s disorder, childhood disintegrative disorder, and pervasive developmental disorder not otherwise specified (PDDNOS), according to the Diagnostic and Statistic Manual of Mental Disorder, 4th Edition (DSM-IV) of the American Psychiatric Association (1994). Hence, etiologically based treatments or interventions have not been developed to “cure” individuals with PDDs. Currently, comprehensive intervention, including parental counseling, behavior modification, special education in a highly structured environment, social skill training, sensory integration training, music therapy, vocational training, and medication treatment (psychopharmacotherapy), has been emphasized.

This article is written for parents and other caregivers of persons with PDDs with the intent to help them gain more knowledge of evidence-based psychopharmacotherapy.

For the purpose of presentation, the term ASD will be used as a synonym of PDDs throughout this paper. However, due to very low prevalence rates of Rett’s disorder and childhood disintegrative disorder, the literature review is mainly relevant to the populations with autistic disorder, Asperger’s disorder, and PDDNOS.

A literature search was carried out for this article using Entrez PubMed Database (www.pubmed.gov), which is a service of the U.S. National Library of Medicine and the National Institute of Health. PubMed includes over 16 million citations from MEDLINE and other life science journals for biomedical articles since the 1950s. For this article, only those English-language studies published between 1994 and 2007 are reviewed.

The main reason for this decision is that the current psychiatric diagnostic system, i.e., DSM-IV, was established in 1994. Hence, most research reports published since 1994 tend to be based on the current diagnostic concept and system. The literature search was done on psychotropic medications, including anticonvulsants, that had been studied in persons with ASD. The present review of relevant literature, however, does not include studies of vitamins and other supplements.

Importance of Learning about Psychopharmacotherapy in ASD

High Prevalence of Using Psychotropic Medications in ASD Populations: Several survey studies have examined the use of psychotropic medications (psychopharmacotherapy) in ASD populations (Aman et al., 1995; Aman et al., 2003; Green et al., 2006; Langworthy-Lam et al., 2002; Martin et al., 1999b; Witwer and Lecavalier 2005). These surveys of prevalence and pattern of use of psychotropic medications in individuals with ASD were mostly carried out by asking caregivers to respond to questionnaires.

Overall, 45 to 55 percent of the individuals with ASD in the surveys were reported to be receiving or being given psychotropic medication(s) for their ASD or related neuropsychiatric disorders. These survey studies found that not all the medications taken by the surveyed populations were effective. In other words, some individuals might have received the wrong or ineffective medications or were taking the wrong dosages.

These findings seem to support the growing concern of some professionals that the increased reliance on psychopharmacotherapy may represent a trend in which quality programming for persons with ASD is being replaced by attempts to find a quick “fix” to emotional and/or behavioral problems through the use of psychotropic medications.

To effectively advocate for persons with ASD, therefore, caregivers not only need to learn why, when, and how the psychotropic medications should be prescribed, they must also learn when to resist pressures from others for getting psychopharmacotherapy for their children with ASD.

One should keep in mind that unnecessary psychopharmacotherapy not only does not help, it also can unwittingly promote chronic illness. The individuals being put on unnecessary medications may come to believe that their problems only respond to medication(s), and the more medications are taken, the stronger the misconception becomes. Furthermore, psychopharmacotherapy can also cause individuals to suffer from side and/or adverse effects.

Off-Label Use of Psychotropic Medications in ASD Populations: A drug is "approved" by the Food and Drug Administration (FDA) for marketing if its clinical database supports its benefit for a recognized condition and its risks are sufficiently offset by its efficacy for a particular indication.

The term "labeling" refers to the indications of a new medication that can be promoted by the pharmaceutical company. Before a new medication can be marketed, a package insert for use by physicians must be prepared. The insert usually contains basic pharmacological information, as well as essential clinical information in regard to approved indications, contraindications, precautions, warnings, adverse reactions, usual dosage, and available preparations. When a physician uses a medication for indications beyond those stated in the package insert, then an "approved" medication is being prescribed for an "unlabeled" or "offlabeled" indication.

A study of “off-labeled uses of medications” (Radley et al., 2006) showed that approximately one out of every five medications prescribed by U.S. physicians are off-label drugs. The study results suggest that three quarters of these off-label uses are not backed by strong scientific evidence for safety and efficacy. Off-label use with limited or no scientific support was most common for psychiatric (96%) and allergy (89%) therapies.

Almost all the psychotropic medications that have been prescribed to children in the United States are off-label use of the drugs. Such observation can also be applied to the ASD population. Therefore, to render appropriate and effective psychopharmacotherapy to persons with ASD, physicians should begin to practice evidence-based medicine.

Evidence-based Psychopharmacotherapy in ASD Populations: The term “evidence-based medicine” was introduced in 1990 to refer to a systematic approach to helping practitioners apply scientific evidence to decision making at the point of contact with a specific person. Doctors who practice evidence-based medicine will search medical journals and databases for specific research studies that applied randomized controlled trials.

These studies evaluate a drug by giving it to a randomly selected group of individuals, while others receive an alternative treatment; sometimes a placebo is used. If the participants on the drug fare better than those on an alternative treatment, a series of complicated statistical analyses can determine if the drug is the reason. When a doctor finds a certain drug that has helped large groups of people, he/she then applies the information to his/her own clients, under the statistical assurance that what holds true for groups is likely to be valid for individuals.

Many psychotropic medications have been tried in ASD populations. The medications include Risperidone (Risperdal), Olanzapine (Zyprexa), Quetiapine Fumarate (Seroquel), Zaiprasidone (Geodon), methylphenidate, Fluoxetine (Prozac), Fluvoxamine (Luvox), Sertralin (Zoloft),Venlafaxine (Effexor), Clomipramine (CMI or Anafranil), Buspirone (BuSpar), Naltrexone, Divalproex Sodium (Depakote), Valproate (Depakene), Topiramate (Topamax) (TPM), Carbamazepine (Tegretal), and Melatonin. Due to the space limitation of this article, readers are referred to the author’s other publication of literature review of relevant psychopharmacotherapy in ASD populations (Tsai, 2007).

This review of literature finds that there is some evidence supporting the use of some atypical antipsychotics (e.g., risperidone) in the treatment of some behavioral problems associated with ASD. The evidence includes several open trials and two placebo-controlled trials of atypical antipsychotics in ASD, all reporting significant improvements in at least half of the individuals studied.

However, in these studies, most of the improvements were seen in such nonspecific behavioral problems as aggression, self-injurious behavior, irritability, and anxiety. With respect to the core features of ASD, improvements were reported for some of the repetitive behavioral features of ASD but not for the social or communication deficits.

Furthermore, the atypical antipsychotics are also clearly associated with side effects, particularly weight gain and sedation, in a significant minority of cases treated. Such side effects have limited the use of atypical antipsychotics in some individuals with ASD.

There is also some evidence supporting the use of specific serotonin reuptake inhibitors (SSRIs) (e.g., fluoxetine) in the treatment of older individuals with ASD. The evidence includes several positive case series and open studies reporting improvements in both repetitive behavior and social-communication symptoms in adults with ASD. There are also positive double-blind, placebo-controlled trials with SSRIs in adults reporting significant improvements in the overall functioning, repetitive thoughts and behaviors, and maladaptive behaviors. However, the evidence of the effects of SSRIs in children is more equivocal.

The findings from the above published studies must be interpreted with caution, given that all the studies reviewed have demonstrated consistent methodological weaknesses (e.g., small sample size, open label or retrospective studies, heterogeneous population due to use of loose diagnosis, lack of control trials, non-blind measuring of treatment effects, reliance on global ratings of improvement and generalized behavior rating scales that do not focus on specific topographies of behavior, and short-term studies). Most of the reported treatment effects also have not been replicated by other investigators. Therefore, it is not clear how these data can be generalized to other populations with ASD.

Conclusion

It is clear that there is no single best medication to treat a person with ASD. Many psychotropic medications have been tried in the ASD population as reviewed above. However, as described, individuals with ASD tend to be placed on psychotropic medications that usually do not show clear benefit. On the other hand, new psychotropic medications appear on the market every few months.

There is an urgent need to establish a mechanism that will be responsible for setting up-to-date evidence-based guidelines or policies for psychopharmacotherapy in ASD populations. A committee should be formed at the national level. Multiple literature searches should be done on each of the psychotropic medications that have been used by most clinicians in ASD populations. The literature searches will include published research studies, abstracts, review articles, and textbooks. All the relevant materials will be reviewed and evaluated by each of the committee members.

Appropriate publications will then be selected for grading the “strength of evidence,” which will consider both the treatment efficacy and adverse/side effects of each of the drugs. A standardized formula that considers the inclusion of diagnosis, sample size, age, gender, treatment protocol, validity of conclusions, and potential sources of bias should be used as the base for grading.

The committee should establish guidelines that would incorporate criteria for identifying “well-established” and “probably efficacious” interventions as proposed by the Task Force of Section on Clinical Child Psychology, the Division of Clinical Psychology, and the American Psychological Association (Lonigan et al., 1998). All selected publications should be graded by all the committee members. A draft of the guideline should include “strength of evidence” of each psychotropic medication for treatment of a certain symptom, symptom cluster, or co-morbid neuropsychiatric disorder(s).

Aman, M.G., Van Bourgondien, M.E., Wolford, P.L., and Sarphare, G. (1995). Psychotropic and anticonvulsant drugs in subjects with autism: Prevalence and patterns of use. Journal of American Academy of Child and Adolescent Psychiatry, 34, 1672–168 1.

Aman, M.G., Lam, K.S.L., and Collier-Crespin, A. (2003). Prevalence and patterns of use of psychoactive medicines among individuals with autism in the Autism Society of Ohio. Journal of Autism & Developmental Disorders, 33, 527–534.

American Psychiatric Association (1994). Diagnostic and Statistic Manual of Mental Disorders (4th ed.). Washington DC: American Psychiatric Association.

Green, V.A., Pituch, K.A., Itchon, Choi, A., et al. (2006). Internet survey of treatments used by parents of children with autism. Research in Developmental Disabilities, 27, 70–84.

Langworthy-Lam, K.S., Aman, M.G., and Van Bourgondien, M.E. (2002). Prevalence and patterns of use of psychoactive medicines in individuals with autism in the Autism Society of North Carolina. Journal of Child & Adolescent Psychopharmacology. 12, 3 11–321.

Lonigan, C.J., Elbert, J.C. and Johnson, S.B. (1998). Empirically supported psychosocial interventions for children: An overview. Journal of Clinical Child Psychology, 27(2), 138–145.

Martin, A., Scahill, L., Klin, A. and Volkmar, F.R. (1999b). Higher-functioning pervasive developmental disorders: Rates and patterns of psychotropic drug use. Journal of American Academy of Child and Adolescent Psychiatry, 38, 923–93 1.

Radley, D. C., Finkelstein, S. N., & Stafford, R. S. (2006). Off-label prescribing among office-based physicians. Achieve of Internal Medicine, 166, 1021-1026.

Tsai, L.Y. (2007). Asperger syndrome and medication treatment. Focus on Autism and Other Developmental Disabilities, 2007, 22, 138-148.

Tsai, L.Y. (2008). Pharmacotherapy. In J. Matson (Ed.), Clinical Assessment and Intervention for Autism Spectrum Disorders (pp383-418). San Diego, California: Elsevier.

Witwer, A. and Lecavalier, L. (2005). Treatment incidence and patterns in children and adolescents with autism spectrum disorders. Journal of Child & Adolescent

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RUN FOR AUTISM News

RUN FOR AUTISM 2008 Takes Off, Headed for a Record Year

RUN FOR AUTISM 2008 is already in full swing with team members participating in winter destination events in Houston and Miami this month. The RUN program, OAR’s signature fundraising event, is poised to continue breaking records. What started with 60 runners in the Marine Corps Marathon raising $110,000 in 2003 saw almost 700 runners participate in races across the U.S. and raise just over $550,000 in 2007. This year’s goals are 1,000 runners and $1 million. Here’s your chance to be one of OAR’s running 1,000!

If the lead off event is any indication, the sky is the limit. OAR’s RUN FOR AUTISM-Houston team has doubled its previous year’s fundraising mark in raising more than $30,000. Miami is next on January 26 and 27.

For persons interested in taking on the long-distance challenge, running in some of the best races in the country, and making fitness more than a personal challenge, RUN FOR AUTISM 2008 offers a host of possibilities. OAR is already accepting registrations for its hallmark races, the Bank of America Bank Chicago Marathon® and the Marine Corps Marathon™, both in October. Entries for these two races are among the most sought after in the country every year.

In addition, OAR will become a charity partner with the Rite Aid Cleveland Marathon (Half Marathon and 5K, too) for the first time in May. And, once again, OAR has a limited amount of entries to the New York City Half Marathon presented by Nike and California’s Disneyland Half Marathon. Both take place in August.

“I encourage runners to sign up as early as possible,” says Doug Marocco, the director of the RUN FOR AUTISM.” These high demand races seem to close earlier every year. OAR’s charity partner status allows us to have guaranteed entries. More important, it allows us to sign up runners for any of these events, even before they open for general registration.”

Marocco goes on to say, “In addition to our charity partner races, a major goal of this year’s RUN FOR AUTISM is to expand our RUN FOR AUTISM –AMERICA program. We welcome all comers: the weekend walker or jogger, the spinning club, the more serious runners, cyclists, and triathletes. If you can’t participate in one of our partnership events, make any event special by joining our team, raising funds for autism research, and representing OAR in a walk or run in your local area.”

All OAR runners, including RUN-America participants, receive the same benefits: team gear, Runner’s Guide, personal fundraising web page, a unique OAR finisher’s medallion, and the satisfaction that comes with doing something for others.

Now in its sixth year, the RUN FOR AUTISM has established itself in the charity running community by providing a quality program and through its partnerships with premier races and by providing a quality program. Most importantly, it provides the opportunity for everyone to participate on his or her own level at a variety of events and distances, all with the goal of raising money to fund autism research.

For more information on the 2008 RUN FOR AUTISM or to sign up, go to www.researchautism.org/news/run or contact Doug Marocco and Geoff Pan at OAR toll free at (866) 366-9710 or run@researchautism.org.

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RUN Profile

A Family Affair: Three Generations Run to Raise Money for OAR

Three generations of the Smith family pose with OAR Executive Director Mike Maloney (far right), (from left to right) Tony and Kathy Errthum, Garland Smith, and Austin Mahlum.

When 16-year-old Austin Mahlum decided to run in the 2007 Marine Corps Marathon this past October, he had three coaches, his aunt and uncle, Kathy Errthum and her husband, Tony Errthum, and his grandfather, Garland Smith. Kathy and Garland have run a total of 22 marathon races between them, 10 for OAR, while Tony has run two, both for OAR.

Because it is a family affair, they inspire each other. “My dad watched me run my second marathon and told me he would run the next one with me,” explains Kathy.“That is when we decided to run for OAR in the Marine Corps Marathon in 2003.I planned on that being my last marathon, but somehow my dad has convinced me to keep running 26.2 miles again and again.”

Garland started running after he had stents put in his heart and the doctor suggested walking as exercise. “His idea of walking evidently included marathons,” his daughter Peggy Mahlum says with a laugh. He had a role model in his daughter Kathy, Peggy’s younger sister, who is a “life runner.”

Tony joined the father-daughter team to impress his wife, Kathy says, when they were first dating. “Or he didn't want to tell meno when I asked him if he would run for OAR in the 2005 Marine Corps Marathon.”

Running for OAR, which Garland and Kathy discovered at a marathon in 2003, was a natural fit, Garland says, since Peggy’s sons and his grandsons, Austin and Spencer, have autism. Together, Kathy, Tony, Garland, and Austin raised $5,285 through their participation in the marathon.

As they were sitting at the OAR dinner in 2005, Kathy recounts, Tony leaned over and whispered, "After hearing these stories from families tonight, how can any person not run another marathon for OAR?" Kathy says she consideredhis statement as a verbal contract to run another one. “Maybe he thinks that after running the 2007 marathon he's off the hook!”

Running with his grandson, Garland says, made the 2007 marathon even better. He laughs as he recalls that Austin stuck with him, his daughter, and son-in-law throughout the route. “He could have run it faster, but he ran with us,” he says.

Austin thought the whole event, including running with his family, was “really cool.  It was something I could do to help myself and others with autism,” he explains.“Plus just running the marathon itself is really cool. My grandpa, aunt, and uncle were running, and I wanted to do it with them.”

Diagnosed with autism when he was 9 years old, Austin is currently a high school sophomore with a GPA of 4.14.  “All of his classes are in regular classrooms with no modifications,” explains his mother, Peggy. “He is the goalie on the soccer team. Austin is becoming increasingly independent and responsible.”

Living with autism has not stopped Austin from achieving the goals he sets for himself. His advice for people who are thinking of running in the marathon next year seems to sum up his motto for the marathon and his whole life: “If you set your mind to it, you can do it.”

His uncle says that Austin is the type of kid who looks at life as a glass half-full. “For Austin, life is good. In the marathon, normally the crowd cheers people on, giving them the energy and excitement to keep going. With Austin, it was the other way around. He skipped and waved his arms and got the crowd going.”

While Peggy and her husband Doug haven’t begun running marathons yet, they did come to Washington, DC, to watch Austin, Kathy, Tony, and Garland. Peggy even spoke at the runners’ dinner, sponsored by OAR and held the night before the marathon.

This is the conclusion of her speech: “Austin’s growth helps to keep our hope alive that his brother, Spencer, will continue to make progress as Austin has. Because of people like all of you who are raising money and awareness for OAR, we have the help available for Spencer. Our boys have a chance to let their light shine and live in a country that is starting to understand and accept people who have autism. I thank you for that. I thank you for your continued support for all of those affected by autism. I thank you for keeping the faith alive and for your dedication to OAR. May God bless you all."

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