Message From the Executive Director

Michael V. Maloney, Executive Director

RUN FOR AUTISM 2008: An Event Everyman (Woman and Child) Can Participate In

Even the occasional reader of The OARacle will recognize that the RUN FOR AUTISM is OAR’s signature fundraising and awareness effort year round. Despite its growing success, I often wonder if the title and our partnerships with leading marathons and half marathons unwittingly suggest elitism and scare away the average person. If my own participation in the Marine Corps Marathon 10K last year (and living to talk about it) isn’t proof enough that even weekend duffers can fully participate, I hope that this self interview will dispel any “athletes only” image our program might mistakenly convey.

Make no mistake, athletes and marathoners of all ages and levels have laid the foundation for this program. My hat’s off to anyone who runs 26.2 miles. For anyone who runs 26.2 miles for autism, I’m not only taking my hat off, I’m standing at attention, retired Marine that I am.

What began with 66 marathoners in the 2003 Marine Corps Marathon™ has expanded to Chicago; Miami; Houston; New York City; Des Moines, IA; and Anaheim, CA, with more than 1,500 runners having raised more than $1.4 million for autism research since that first race. What doesn’t rise to the surface amidst all those numbers is that our success hasn’t come from just marathoners alone. We’ve had walkers and joggers on the casual side and cyclists, triathletes, and runners looking to qualify for the Boston Marathon on the more serious side, and a whole lot of people in between. Simply put, if you care about the cause and want to participate, there’s a place for you on our team.

OAR’s goals for 2008 are to have 1,000 runners and raise $1 million. There’s room under that umbrella for just about anyone. I hope you will be one of our “Running 1,000.”  Before you sign up, however, let me try to answer your questions in advance and make it clear beyond any doubt that you don’t have to run a marathon to be part of the team and make a difference.

Q:  Where is your run? 

A:  We get this question all the time. We don’t have our own run yet. OAR participates in major races across the country as a charity partner. Thanks to our runners, each race becomes in part a RUN FOR AUTISM. This allows OAR to focus on its runners and fundraising without having to take on the considerable logistics of organizing our own race. Our own race is on the drawing boards, however. I predict that you will see OAR’s own RUN FOR AUTISM running event within two years.

Q:  I’d love to participate, but I don’t do marathons and don’t live near any of your major race locations. What can I do?

A: Find a local race--fun run or 5K--and sign up for OAR’s RUN FOR AUTISM – America Team, created exactly for people like you. You receive the same team gear and fundraising support as the runners in the major races, except that the OAR Finish Line Team can’t be there to cheer you on and congratulate you personally at the end of the run.

Q:  I’ve never run a marathon, but I’d like to try. What kind of training support and encouragement does OAR provide?

A:  The majority of our runners are first-time marathoners, so you are not alone. One marathon coach I heard speak used a great line, “The marathon has become everyman’s Mt. Everest.”  It’s a challenge no doubt, but the rising numbers of people running marathons suggests the coach’s quip is accurate.

Each OAR runner receives a training guide complete with information on training, nutrition, cross training, and more. In addition, OAR has partnerships with marathon training programs in Washington, DC, and Chicago as well as a reciprocal agreement with USAFIT that allows OAR runners to participate in a local USAFIT program if one is available in your area. In addition, OAR’s RUN FOR AUTISM staff can also recommend several online training programs.

You’ll find encouragement in lots of places: from training buddies, spouses, friends, family, kids, and perhaps even the family pet. Of course, encouragement is always just a phone call or e-mail away in the form of our OAR RUN FOR AUTISM staff. Most of all, you’ll find it from within as you think about why you’re running and push through the most difficult challenges by invoking images of the child with autism you’re running for, the family you know that’s touched by autism, or the visualization of crossing the finish line and celebrating that accomplishment with your waiting loved ones. With great challenge comes great accomplishment, the unique camaraderie of the day and, yes, in that moment, membership in the elite group you have just joined.

Q:  I’m not an athlete or runner of any kind. Do you have any walks?

A:  We don’t have any walks, but we’ve had walkers in shorter races and as part of the Marine Corps Marathon 10K (that’s just over six miles) every year, including none other than my friend and OAR President Dr. Peter Gerhardt last year. One look at Peter or me will answer the question about athletes-only participation!

Q:  I’m a little nervous about fundraising. How does that work?

A:  You’re right. Being nervous is normal. Here’s how we help. With the online fundraising page, printed materials, and fundraising guide OAR provides, it’s EASY. Just tell people what you are doing and why, and ASK for their support. Autism awareness is at an all-time high among the general public, thanks to the efforts of many parents and autism organizations over the past 10 years. People will respond positively. Not everyone you ask will donate, but even those who don’t will admire that you are doing something for such a worthy purpose.

OAR tries to make it as easy as possible. In most cases, OAR lets you “set and meet your own goal.” [There are a few instances where OAR does set a required minimum fundraising requirement. Our Web site and my staff will make it clear before you sign up for any of those events. Ask if you’re not sure.]  Just use the tools OAR provides in the Runner’s Kit, and you will see how much fun it is as your family and friends send notes of encouragement and pride. You will be amazed at the genuine interest and generosity of those who respond. My bet is that you will surpass your initial goal early on and end up well beyond it by race day.

Q:  What’s this have to do with OAR’s mission?

A:  That’s a great question. OAR’s mission implies three vital tasks: Raise Money…Fund Research…Change Lives. The RUN FOR AUTISM raises money, more than $1.4 million since 2003. That money funds research. It’s no coincidence that OAR has invested $1.4 million in new applied autism research studies in the same span. OAR’s hope is that the fundraising and awareness efforts of the hundreds of OAR runners wearing RUN FOR AUTISM teal-colored shirts with the sun logo on their chests in races across America will provide the resources, research outcomes, and public support that will truly change lives for all persons with autism and their families.

Q:  How do I join?

A:  Sign up on our Web site here or contact OAR’s RUN FOR AUTISM staff at (703) 243-9710 or run@researchautism.org.

Q:  Are you ready to participate?

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Conference Line-Up Filled with "All-Star" Speakers

Dr. Ami Klin to Provide Keynote Address

OAR is pleased to announce that the speakers’ lineup for the sixth annual Applied Autism Research and Intervention Conference, October 24–25, 2008, is complete. Heading the list as the opening keynote speaker is Ami Klin, Ph.D., Harris Associate Professor of Child Psychology and Psychiatry at the the Yale Child Study Center, a nationally and internationally recognized researcher and speaker. Joining him in the trio of keynote speakers are Joanne Gerenser, Ph.D., executive director of Eden II programs in New York and a member of OAR’s Scientific Counsil, and Roy Richard Grinker, Ph.D., professor at George Washington University, father of a child with autism, and author of the book Unstrange Minds: Remapping the World of Autism.

In addition to the keynote speakers, many more presenters will follow in breakout sessions throughout the two-day event, including OAR President and Chair of the Scientific Council Peter Gerhardt, Ed.D. Sixteen sessions will be arranged by topic into two tracks each day, focusing on: OAR Sponsored Research, Research into Effective Practice, Social Skills/Adaptive Behavior, and Life Outside the Classroom. More than 20 of today’s leading researchers and professionals in the autism community and hundreds of attendees will discuss and discover the current state of applied research in autism.

Dr. Gerhardt, who personally invited each speaker, is delighted with the experience and mix of the speakers and the range of topics they will address. “With respected speakers from across the country and, this year, across the ocean, this next conference promises to be the most comprehensive and informative meeting yet,” he says. “From the opening keynote on Friday to the closing presentations on Saturday, parents and professionals alike can expect to hear the most current autism information presented in an accessible and usable form.”

The two-day conference will be held at the Westin Arlington Gateway in Arlington, VA. Many of the sessions will qualify for BCBA and ASHA Continuing Education Units (CEUs).

Registration is now open. Early registration is $50 for one day and $90 for both days. Fees are waived for persons with autism and RUN FOR AUTISM participants. Scholarships are available on a case-by-case basis.

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Focus On OAR Research

Supporting Success: Determining The Needs of College Students with Asperger Syndrome

Dr. Janet Graetz

The good news is that, according to colleges and universities cross the country, more students with Asperger Syndrome are attending institutes of higher education. The bad news is that many of them may not find the kind of support they need to complete their degrees. And this is bad news not only for the students and their families but also for society as a whole, which loses out on the contributions that would have been made possible by the education those students received.

In her research project proposal, Janet Graetz, Ph.D., wrote, “While some students exhibit academic problems that may be addressed by a college’s disability support services office, other support that promotes interpersonal skills, psychological well-being, adaptability, and leadership has gone unaddressed.” She witnessed the difficulties of students with Asperger Syndrome first-hand in her position as assistant professor at Oakland University in Rochester, MI. “During the first year I was here, in 2003, students with Asperger Syndrome would knock on my door to talk with me about their college experiences.

Academically, they were doing all right but they were having difficulty with the social piece of college life.” She worked with a counselor at the school to provide counseling to those students, but that was not enough.

During those conversations and subsequent conversations with Nick Dubin, a doctoral student with Asperger Syndrome who did an internship with her from 2004 through 2006, Dr. Graetz realized how little was known about the experiences of students with Asperger Syndrome in college. In 2006, Oakland created an Asperger’s Panel to begin addressing the issues of needed supports. The panel discussions spurred Dr. Graetz to propose a study that would follow a group of students through two semesters at Oakland, as she described in the proposal:

Although we know through student self-identification there are at least 25 students with Asperger’s Syndrome attending OU, we do not know how they are facing increased academic demands, which support offerings (if any) they are using, which services and supports are most useful to them, and what types of support they feel are lacking. In addition, we do not know how they feel about themselves, their college experience, and their new sense of independence. It is necessary to gain a better understanding of these individuals and their lives on a university campus to enable them, and  those on other campuses around the country, to have a successful college experience.

How the Study Works

The study for determining the needs of college students with Asperger’s Syndrome was recently approved for funding in 2008 by OAR. It requires that the students report weekly through a Web site that will provide confidentiality. Dr. Graetz explains that the students will first answer a series of questions, then write a diary reporting on their weeks. Questions will identify the supports they utilized that week, the extracurricular activities they attended, and their use of peer supports. Students will also undergo pre- and post-reporting assessments and parents will be asked to complete surveys regarding the educational, medical, and developmental history of their children.

“The questions ask things like how often did the student visit the library and offers multiple choice answers, such as twice a week, once a week, or not at all,” Dr. Graetz says. The diary section offers the students a chance to write about their weeks in their own words, describing what went well for them and what did not go well.

Ultimately, says Dr. Graetz, she hopes the study will reveal what kinds of supports students at Oakland need as well as a broader idea of what students with Asperger Syndrome at any college or university require in order to successfully finish their degrees.

Fifteen students began reporting this semester, and Dr. Graetz hopes to recruit a few more. They will continue their reporting until the semester ends, then pick up again in the fall of 2008. Dr. Graetz selected the students based on their self-reporting of Asperger Syndrome to the college.

Outcomes

In early 2009, Dr. Graetz and her team will analyze the responses and prepare a report with recommendations for how students at Oakland can be better supported. The report will also be useful, Dr. Graetz believes, beyond Oakland University. “We plan to disseminate the findings to other colleges and universities.” And, she hopes that high schools will also make use of the information. “What might need to happen at the high school level that isn’t happening to better prepare students for their college experiences? For example, two students here got close support from teachers at their high schools, but that kind of support was not available in college. High schools may need to look at how independent they are making their students. Are they ready for their college experiences?”

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News from OAR

Call for Nominations for the Jae Davis Memorial Award

After a two-year hiatus, OAR is reinstituting the Jae Davis Memorial Award for Community Service and calling for nominations. In April 2004, OAR announced the establishment of the award in honor of Davis, the mother of a child with autism and an advocate for individuals with autism spectrum disorders, who lost her battle with cancer in October 2003.

Prior to that, her example of service served both as an inspiration to all parents and as the basis of the award OAR established in her name with the enthusiastic support of Jae’s husband, Bill, and her children, Danielle, Jessica, and Christopher.

The Davises were committed to raising awareness of autism and advocating for their son and others like him. They trained themselves in a variety of therapies and treatments and created an in-home autism-treatment program open to anyone. Additionally, Jae helped set up internship programs with colleges in the Lancaster PA, area where she lived, started home programs, and implemented communication systems for families of young children with autism throughout Pennsylvania.

In the first year of the award, OAR honored two individuals, Lisa Ackerman, executive director, Talk About Curing Autism, and Nancy Cale, vice president, Unlocking Autism. Ron Oberleitner, general manager, Talk Autism, was the first man to receive the award in 2005.

When OAR lost contact with Bill, who represented the family in the award selection process, it temporarily suspended the award. When he reconnected with OAR late last year, the first thing he asked about was the status of the award in Jae’s memory.

The award is intended to recognize individuals whose actions serve to enhance the quality of life for those affected by autism in clearly measurable terms in the same manner as Jae Davis’ had. Nominations are open. OAR welcomes nominations from anyone familiar with a nominee’s accomplishments. OAR does not accept self-nominations.

To nominate an individual for this award, please send a letter describing the nominee and his/her special qualifications and accomplishments along with two letters of support from persons unrelated to the nominee or to OAR. Neither the letter of nomination nor the letters of support should exceed two pages in length and must include full contact information. The nomination deadline is September 1, 2008.

The review committee will be made up of Bill Davis, OAR Executive Director Mike Maloney, and a member of OAR’s Board of Directors. OAR will notify the winner during September, 2008, and invite him or her to OAR’s annual Applied Autism Research and Intervention Conference, October 24-25, 2008, to receive the award.

For more information, please contact Executive Director Mike Maloney at (703) 243-9727 or info@researchautism.org.


Gerald Koocher Joins OAR’s Scientific Council

Dr. Gerald Koocher

OAR is pleased to announce the addition of Gerald Koocher, Ph.D. to its Scientific Council. “We are delighted to add a professional like Dr. Koocher to the Scientific Council,” says OAR President Peter Gerhardt. “Just one look at his impressive experience will tell you immediately that he is eminent in his field.”

Dr. Koocher’s expertise in ethical aspects of psychology practice and research, psychological assessment, and mental health malpractice will bring added depth and perspective to an already impressive Scientific Council, particularly as he fills the seat (and role) vacated by Dr. Robert Sprague upon his retirement from the Council.

Dr. Koocher, dean and professor of the School for Health Studies at Simmons College in Boston and lecturer in psychology at Harvard Medical School, has a combination of research, teaching, and clinical experience that focuses on the professional and ethical aspects of psychology practice and scientific research. He also works with children and adults coping with chronic or life-threatening illnesses (especially cancer, cystic fibrosis, and diabetes). He also serves on the NIMH Data Safety Monitoring Board that monitors autism studies.

Dr. Koocher lectures and supervises interns and post-docs at Harvard Medical School, while holding other appointments at Boston's Children's Hospital, where he was the chief pediatric psychologist for 13 years before moving to Simmons College. He still donates time one day a week at the Children's Hospital, managing two or three children's cases and supervising psychology interns.


OAR Welcomes New Staff Member

Gerald Engel, VP Marketing and Development

Gerald (Jerry) C. Engel assumed the role of vice president of marketing and development for OAR on January 1, 2008. Jerry’s responsibilities include: business development, fund raising, corporate branding, public relations, and media outreach. Working to improve these areas of service will help increase OAR’s outreach and awareness efforts.

Formerly managing partner of C&E Communications in Ellicott City, MD, Jerry brings more than seven years of communications and business experience to OAR and worked in sales for many years before that. He also brings a reputation for creating alliances and partnerships, and taking clients’ marketing and communications budgets far beyond initial projections.

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Research Review: Challenging Behavior

by Peter Gerhardt, Ed.D.

A percentage of individuals with autism engage in problematic or challenging behavior including aggression, self-injury, disruption, property destruction, and stereotypy. Beyond the potential for injury to oneself or others, a person displaying these behaviors can also negatively impact learning, restrict access to more typical events and environments, and require a considerable amount of resources to effectively address. This month’s article reviews looks at some recent research into the assessment of and effective intervention related to challenging behavior.


The Long-Term Successful Treatment of the Very Severe Behaviors of a Preadolescent with Autism

Foxx and Garito present a data-based case study on the reduction of a variety of significantly challenging behaviors in a 12-year-old boy with a previously established autism diagnosis. “Ned,” a Romanian orphan, was adopted at the age of 2 and subsequently diagnosed with autism (and ADHD) one year later. At the time of the investigation, Ned was reported to be taking Resperdal, Depakote, Clonadine, and Stratera although dosage levels were not reported. Over the years, Ned’s array of challenging behaviors had resulted in a number of different school placements, leading to a nine-month stay at “a renowned inpatient severe behavior treatment unit where a number of functional analyses were conducted” (p. 71). These analyses indicated that maintaining variables included access to tangibles, sensory reinforcement, and escape from demands. At discharge from his in-patient stay, Ned engaged in aggression, on average, six times per hour, disruption also six times per hour, and self-injury 32 times per hour.

The current investigation’s baseline (Phase I) consisted of the implementation of the program developed by the in-patient facility and was carried out in an elementary school classroom where Ned was the only student. After four months, Ned’s behavior had deteriorated to the point where he was removed from the classroom and home schooled for five months (Phase II). The intervention during Phase II consisted of a rich schedule of differential reinforcement, a token-earn program for compliance, a response-cost program for episodes of aggression or self injury, and, if redirection was ineffective, physical restraint.

Phase III took place across a variety of settings including a classroom in Ned’s church, other areas of the church and grounds, and various locations in the community over a total of 21 months. Although he was in “a highly reinforcing and less demanding environment, Ned continued to display some of the targeted behaviors” (p. 75) and, as such, several new procedures were added to the program at this point. These included contingent exercise as a consequence for aggression, a less-intensive contingent exercise program for disruption during instruction, and overcorrection for specified dangerous and disruptive behaviors.

During Phase IV (three months), Ned was transitioned back to a classroom in his home school where all treatments, with the exception of the contingent exercise program for disruption, continued as in Phase III.

The results, in brief, documented that, during Phase III, all of Ned’s target behaviors had been reduced an average of 96 percent, and, in Phase IV, the same set of behaviors were reduced by greater than 95 percent with three at zero. In addition, during Phases III and IV, there were documented increases in Ned’s academic skill acquisition, social engagement, and the use of more complex language in the form of sentences to express his wishes. The authors attribute the overall success of the intervention to these factors among others: that aggression and disruption no longer resulted in escape from demands, functional communication training was emphasized, a dense schedule of positive reinforcement was delivered, and choice making and problem solving skills were emphasized.      

Foxx, R.M., & Garito, J. (2007). The long-term successful treatment of the very severe behaviors of a preadolescent with autism. Behavioral Interventions, 22, 69-82.

Assessing Challenging Behaviors in Children with Autism Spectrum Disorders: A Review 

In their review of the literature on assessing problematic behavior in children on the spectrum, Matson and Nebel-Schwalm note that, overall, there has not been a great deal of research regarding assessment, identification, and monitoring of this particular topography of behavior. The authors identified three primary methods of evaluating problematic behavior reported in the research, including the use of paper/pencil (i.e. scaling) assessments, direct observation of clearly defined behavior, and the completion of a functional analysis.

As to scaling methods, the Behavior Problems Inventory (BPI) was discussed as the most extensively researched scale, consisting of 52 respondent-based items measuring self-injury, aggression, destruction, and stereotypic behavior. Although in need of additional research and subsequent refinement, scaling methods may represent a way to more systematically assess a broad range of challenging behaviors in learners on the spectrum.

A more behavior-analytic approach to assessment of challenging behavior is represented by the direct observation of clearly defined behavior and the growing body of literature on the efficacy of functional analysis technology. The purpose of either method of assessment is to identify those variables maintaining the behavior in question and, subsequently, develop functionally indicated intervention strategies. On this topic, the authors note, “functional assessment as means for establishing the maintaining variables for these responses [has] been impressive” (p. 574), but that far more research, particularly focusing on learners with autism spectrum disorders, remains to be done on the topic.

Matson, J.L., & Nebel-Schwalm, M. (2006). Assessing challenging behaviors in children with autism spectrum disorders: A review. Research in Developmental Disabilities, 28, 567-579.


An Examination of the Effects of a Classroom Activity Schedule on Levels of Self-Injury and Engagement for a Child with Severe Autism

In this investigation, O’Reilly and colleagues examined the effects of an individualized and functionally determined picture schedule on levels of self-injury and appropriate engagement for a 12-year-old boy with a previously established diagnosis of autism. The student, Brendan, was described as nonverbal with a history of self-injury (forceful slaps to his face or forehead) since he was a young child. A functional analysis was conducted (attention, no interaction, demand, and play) at the start of the investigation to determine the variables maintaining self-injury.

In Phase I of the functional analysis, self-injury was examined under all four conditions with self-injury occurring primarily in the demand condition. Based upon these results, in Phase II of the functional analysis, only the demand (high probability of self-injury) and play (low probability of self-injury) conditions were presented to determine if the interspersing of these two conditions would result in reduced frequencies of self-injury. However, self-injury remained at elevated levels during Phase II due, it was hypothesized, to a lack of any clear differentiation between the onset/offset of the two conditions.

In Phase III, the impact of a different sequence of sessions (demand > no interaction > play > demand) with more distinct boundaries was examined. This particular sequence resulted in a reduction in self-injury to zero under the conditions of the functional analysis. The Phase III schedule was then transitioned back to Brendan’s classroom where, using an ABAB reversal design, its impact on self-injury was compared to that of “typical” classroom activity absent the schedule.

The results indicated significantly fewer episodes of self-injury during the schedule condition, which was accompanied by relatively high levels of engagement. At three- and five-month follow-ups, self-injury remained at low levels while academic engagement remained high. The authors note that this study “presents preliminary evidence that functional analysis methods might be helpful in developing predictor strategies such as individualized schedules for such students” (p. 310).

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Research Feature: A National Strategy for Research on Autism Spectrum Disorders

by Ann Wagner, Ph.D.

Dr. Ann Wagner, Ph.D., a member of OAR’s Scientific Council, is chief of the Neurodevelopmental Disorders Branch in the Division of Pediatric Translational Research and Treatment Development (DPTR) at NIMH.  This program directs and supports research on the causes and treatment of neurodevelopmental disorders, including autistic spectrum disorders.  She is also chair of the NIH Autism Coordinating Committee and the executive secretary of the federal Interagency Autism Coordinating Committee. Prior to her work at NIMH, Dr. Wagner provided psychological services for children with autism and their families, did clinical research, and provided training in an academic medical center.

January’s OAR newsletter contained an article by OAR President Peter Gerhardt in which he noted that 2007 was a record year for OAR research funding. Efforts like those of OAR are contributing to a dramatic increase in the amount of non-federal funding for research on Autism Spectrum Disorders (ASD). If current trends continue, annual funding for ASD research provided by non-federal organizations will soon equal or surpass federal funding. The overall rise in ASD research funding is obviously a positive development in terms of opportunities for advancing scientific knowledge and improving the lives of individuals affected by ASD. Another benefit of this funding situation is an increasing effort by federal and non-federal funding organizations to work together. There is increasing recognition that a coordinated effort is needed to advance the field in a way that maximizes both efficiency and relevance to the lives of people affected by ASD. We are now seeing an unprecedented degree of coordination and collaboration among private and public funding groups, ASD researchers, and individuals with ASD and their families.

One opportunity for increasing collaboration and coordination is in the implementation of requirements of the Combating Autism Act (CAA) of 2006 (P.L. 109-416). This very important legislation was the result of the autism community’s success in communicating to Congress the urgency of their need for information that would lead to better interventions, services, and support. The federal agencies involved in implementation of the CAA 2006 are committed to the legislation, which includes obtaining input from the community affected by ASD, and coordination and collaboration with non-federal agencies, in order to increase the efficiency and speed with which progress can be made. Below is a description of activities undertaken thus far in response to provisions in the CAA 2006 related to ASD research.

In December 2006, Congress passed the CAA 2006, which contains important language related to the conduct of autism research and the provision of services for individuals with autism. The Act directs the Department of Health and Human Services (HHS) to establish an Interagency Autism Coordinating Committee (IACC) to coordinate all federal efforts concerning autism. The IACC is charged with developing a strategic plan for autism research, submitting the initial strategic plan and annual updates to Congress, and providing annual updates on research advances. The CAA also requires the director of the National Institutes of Health (NIH) to expand NIH research activities on the causes, detection, prevention, treatment, and services for autism spectrum disorders.

Many readers will remember that there has been an IACC in existence since 2001. However, the CAA of 2006 expanded the responsibilities of the IACC, disbanded the “old” IACC and formed a “new” IACC that is governed under the Federal Advisory Committee Act (FACA). The new IACC includes increased membership of non-federal representatives and authority for the development of the strategic plan and related recommendations. HHS Secretary Michael Leavitt appointed public members to the IACC, and delegated authority for appointing the federal members and organizing the committee to the National Institutes of Health (NIH).

Federal agencies represented on the IACC include several institutes at the NIH (NIMH, NICHD, NINDS, NIEHS, NIDCD), the Centers for Medicare and Medicaid Services (CMS), the HHS Office on Disability, the U.S. Department of Education (DoE), the Substance Abuse and Mental Health Services Administration (SAMHSA), the Administration for Children and Families (ACF), the Centers for Disease Control and Prevention (CDC), and the Health Resources and Services Administration (HRSA).

Public members are Lee Grossman, president and CEO of the Autism Society of America (ASA); Yvette Janvier, M.D., a developmental/behavioral pediatrician who specializes in the care of patients with autism; Christine McKee, J.D., the mother of an autistic child who is implementing a home treatment program; Lyn Redwood, RN, MSN, president of the Coalition for Safe Minds; Stephen Shore, Ed.D., an individual with ASD and international consultant; and Alison Tepper Singer, MBA, executive vice president of Autism Speaks. Dr. Thomas Insel, director of NIMH, serves as the IACC chair.

The new IACC held its first meeting on November 30, 2007, and will continue to meet at least twice a year. The meetings are open to the public and are held either on the NIH campus in Bethesda, MD, or at a nearby location. The all-day meetings include presentations and discussions about member activities and projects of the IACC. The meetings also include scientific presentations from investigators in the field of autism research. A portion of each meeting is reserved for public comment. A summary of each meeting is posted on the IACC website. Information about the IACC, including its membership, meeting dates, a link to the CAA of 2006, and activities of the previous IACC can be found at www.nimh.nih.gov/research-funding/scientific-meetings/recurring-meetings/iacc/index.shtml.

At the November 2007 IACC meeting, members discussed and approved a process for developing the strategic plan for autism research required by the CAA 2006. This process will result in a strategic plan incorporating a prioritized set of research initiatives that will guide research over the next several years. Built into the process is the opportunity for public input at several points during the development of the strategic plan. The initial phase of development of the strategic plan is well underway. A Request for Information (RFI) was issued in December 2007, and widely circulated by the government and voluntary autism organizations. The community was invited to submit recommendations about priorities for ASD research. Over 500 responses were received, summarized, and provided to IACC members and others involved with the planning process.

Recognizing the need for scientific and community input, a series of four one-day workshops was held in January 2008, focusing on one topic each day: biology, treatment, diagnosis, and risk factors. For each topic, a panel was convened that included top scientists in the related field as well as IACC and community members. The comments submitted in response to the RFI were provided to workshop participants and considered during the workshop proceedings. Workshop participants considered the state of the science in their particular topic area, the questions still unanswered, and what research resources would be needed to answer those questions. They were asked to give highest consideration to research activities that would have the most impact on the quality of life for individuals with ASD and their families.

During the workshops, a number of proposed research initiatives were developed by each workshop. [OAR President, Peter Gerhardt, Ed.D., and OAR Scientific Council members Brenda Smith-Myles, Ph.D., and Sam Odom, Ph.D., participated in these workshops.]  The resulting set of initiatives will be reviewed by a strategic planning workgroup of the IACC for initial prioritization across all topic areas. The workgroup, which is advisory to the IACC, is comprised of representatives from the scientific community and major ASD funding organizations. It is the responsibility of the IACC to decide upon final priorities that will be included in the strategic plan. Once the plan is written, it will be submitted to the Department of Health and Human Services, which is responsible for reporting to Congress.

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Profile: Living in an Age of Hope

Dr. Firestone poses with Norton Kell after his graduation from pre-school

Barbara Firestone, Ph.D., owes her career to a small boy named Timmy. She met him during her freshman year at Douglass College, the women’s college of Rutgers University in New Jersey. She had not yet decided on a major or a profession.

Through a field trip organized by her speech and communications professor, Dr. Firestone spent an hour with Timmy, who was nine years old, at the state institution where he lived. The professor took the class there to better understand how profoundly critical communication is. “Timmy was completely unresponsive to me. At the time, he seemed to me to be in a world of his own with no interest in or even consciousness of the world around him. No matter what I pulled out of my bag of tricks, I could not engage him.”

The first time she heard the word “autism” was when a staff member explained to her that autism was the diagnosis for Timmy’s condition. “It was one of those ‘aha’ moments in life. I called my parents and told them about meeting the little boy. The time I spent with Timmy kick started my professional efforts.” She majored in speech pathology and then got a master’s degree in communicative disorders, followed by a Ph.D. in special education.

In 1975, she became the executive director of a small speech and hearing center in Los Angeles that provided speech and hearing services for children in the area. As the local school systems developed more and more in-house services, the need for the center’s services was decreasing. Dr. Firestone proposed to the Board that the organization start a school that would provide special education for children who had severe communicative disorders that included children with autism.

Opening Doors

In October of that year, the doors of The Help Group opened to four children. Today, Dr. Firestone still leads The Help Group, which helps more than 5,000 children through six schools and a wide range of programs and offers support and training to parents and professionals as well (see the story about The Help Group). “The best thing about my job is being able to watch faculty and staff as they help children reach their fullest potential. I can walk on campus or go to graduations and see firsthand the progress the children we work with are making. The children are a constant source of inspiration.”

In addition to her work with The Help Group, Dr. Firestone has also been a vocal advocate on behalf of children with disabilities and their families, and currently serves as the vice chair of the California Legislative Blue Ribbon Commission on Autism, which was established by the state legislature in 2005 to close existing gaps in programs, services, and funding in the early diagnosis and early treatment of autism; the education of students with autism and professional development; and the planning that is needed to address the “aging out” of children from California’s school system into adulthood.

She recently completed a new book, Autism Heroes: Portraits of Families Meeting the Challenge. Her book relates the experiences of 38 families from different walks of life with children, adolescents and young adults with all forms and degrees of autism, with photography by Joe Buissink, a father of two children with autism. The families speak candidly about their experiences and their challenges, triumphs, and hopes. The family narratives are set against the backdrop of Dr. Firestone’s essays about the importance of dignity, hope, opportunity, and love in lives of the featured families. Dr. Firestone hopes that the book will offer encouragement to parents who are just starting out on their own journeys with children with autism, and to parents already on the journey. 

With more than 30 years of experience of developing programs for children with a wide-range of disabilities, Dr. Firestone says what she hopes people will take away from her experience and those of the professionals on The Help Group staff is that every single child “possesses potential. The programs and services can have a real impact, particularly in the area of early identification and intervention. Autism is no longer the dead end diagnosis that it was once thought to be—a diagnosis can open the door to the opportunities that can make a difference. It is the voices of parents advocating on behalf of their own children and the greater community that led us to this place where I can write a book that is full of hope.”

Dr. Firestone illustrates the hope she sees with this story:  “As the children at The Help Group’s pre-school graduations sing ‘If You’re Happy and You Know It, Clap Your Hands,’ I see their parents with tears on their faces and they are not tears of despair but joy at what their children can accomplish. We are living in an age of hope.”

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Salute: Education Grounded in Dignity, Hope, Opportunity, and Love

In 1975, two events led to the evolution of the family of agencies known today as The Help Group and created the impetus for The Help Group’s position today as the largest nonprofit organization of its kind for children with special needs related to autism, Asperger Disorder, learning disabilities, attention deficit hyperactivity disorder, mental retardation, abuse, and emotional problems.

The first was the arrival of Barbara Firestone, Ph.D., who became the executive director of a small nonprofit speech and hearing center in the Los Angeles area. She presented a proposal to the Board of Directors to establish special education day school programs for children who had severe disorders of language, that in many cases were secondary to other disabilities like autism. The Board said yes.

The second was the passage in 1975 of the federal Education for All Handicapped Children Act, which legislated the right of every child to a free, appropriate, publicly supported education. This resulted in the proliferation of opportunities within public school settings as well as the development of non-public schools, like The Help Group’s schools.

The Help Group’s first school opened its doors in October 1975 and welcomed four children into its first classroom. Today, 1,300 children and adolescents attend one of six day schools on four campuses in the Los Angeles area. Other Help Group programs offer mental health and therapy services, child abuse, foster family, and residential programs to more than 5,000 children and their families each year. The Help Group also offers graduate and post-graduate professional training programs. Through its public awareness, professional training and parent education programs, and efforts at the state and national levels, The Help Group touches the lives of children with special needs across the country and in other parts of the world.

Close Attention to Each Child’s Potential

Dr. Firestone and California Senator Darrell Steinberg take a break during a meeting of the California Blue Ribbon Legislative Commission on Autism.

“We take the approach that each child is unique and has unique potential and can make progress if he or she is given the opportunity. The foundation of our philosophy is the belief that every child’s birthright is dignity, hope, opportunity, and love,” says Dr. Firestone. Practically, that approach and philosophy translates into a wide range of services and opportunities for children and their families, not only in Los Angeles but also across the country.

The Help Group offers four schools for children and adolescents with autism spectrum disorders (ASD). More than 750 students from the ages of 3 to 22 attend the schools, which include:

• The Young Learners Preschool for Autism, designed for children with ASD and other social communications and developmental delays

• Village Glen School, which provides education for children with social and communicative disabilities, including nonverbal learning disabilities and Asperger syndrome

• Bridgeport School, which integrates an academic curriculum with hands-on life skills training and vocational services for students with mild cognitive delays and challenges in the areas of social communication and/or language development

• Sunrise School for Autism and Developmental Disabilities, dedicated to promoting communicative, behavioral, social, academic, motor, adaptive, and independent living skills

In addition to its day schools, The Help Group offers these programs and services.

• Mental health services programs offer psychiatry; individual, family, and group therapy; case management; early-intervention day treatment services for at-risk preschoolers; after-school enrichment for at-risk children; and vocational services.

• The Center for Autism Spectrum Disorders offers comprehensive assessments using scientifically validated diagnostic tools for children from 18 months to adults. The Help Group also provides therapeutic intervention; family support; therapeutic preschool programs; after-school programs; and summer camp for children with autism, high-functioning autism, and Asperger syndrome.

• The Stepping Stones program offers a therapeutic day treatment program for preschoolers with behavioral and emotional difficulties

• The speech pathology and occupational therapy programs provide comprehensive assessment and intervention services on current research and best practices in individual, small-group, and classroom settings.

• The Help Group-UCLA Autism Research Alliance is dedicated to enhancing and expanding clinical research into ASD education and treatment and to contributing to the development, greater understanding, and use of best practice models by educators and clinicians.

• The Help Group - UCLA Neuropsychology Program is a partnership program that provides neuropsychological assessments and consultations for children, adolescents, and young adults and enriches the field of knowledge through its research and educational endeavors.

• The Child Abuse Prevention and Intervention Programs include child and family counseling, foster family recruitment and placement, family preservation, teen parenting, and family reunification counseling.

• Project Six creates therapeutic living opportunities in nurturing, home-like settings for children, adolescents, and young adults with developmental disabilities. With a full continuum of integrated services, these programs promote personal and interpersonal development, vocational, and independent living skills.

Many of the practices used by The Help Group’s educators and therapists have been developed as a result of OAR-sponsored research, says OAR Executive Director Mike Maloney.

Supporting Parents and Professionals

The Help Group also offers training and support for professionals working in the field of special education and parent education and training programs as well as support groups for parents and professionals. The ASD Parent Support Network’s monthly meetings are offered at no cost. A team of experts, including parents of children with ASD and members of The Help Group’s educational and therapeutic staff, facilitates each group.

The Help Group also offers a Distinguished Lecturer Series and its annual Summit: Advances and Best Practices in Autism, Learning Disabilities and ADHD for parents and professionals. It also publishes the HelpLetter, a newsletter that focuses on topics related to autism, Asperger Syndrome, and learning disabilities, with articles written by experts in their respective fields.

The Help Group is also keenly aware of the need to advocate on behalf of people with disabilities. Dr. Firestone serves as vice chair of the California Legislative Blue Ribbon Commission on Autism. In addition, The Help Group has initiated awareness campaigns in English and Spanish to educate parents about the early signs of autism and about the importance of early identification and intervention.

Dr. Firestone says that The Help Group is looking forward to another expansion of its efforts with its Steps to Independence initiative, which will be for young adults with ASD. “We are really concerned about what will happen as young adults age out of the educational system. No matter where they are on the spectrum, they will need to develop skills to live as independently as possible and to succeed in the workplace.” The Steps to Independence initiative will include a range of programs to help young adults do just that, she says.

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RUN FOR AUTISM News

An Exceptional Miami Marathon Brings Exceptional Contributions 

On January 27, 2008, the RUN FOR AUTISM returned to Miami for the second year as an official Charity Partner of the ING Miami Marathon and Half Marathon. The RFA team of five runners had an exceptional day and, most important, helped the team raise more than $10,000 for autism research.

Running in his first half marathon, Aron Burger was the first OAR runner across the line with a 2:04 time followed closely by Mari Saleta in 2:08. Christina Rojos and Nancy Hausman finished within one minute of each other in 2:15 and 2:16 respectively, rounding out the half marathon runners. Setting the example in fundraising and running, Rod Lauredo completed his sixth Miami Marathon in 4:08.  Between his participation in the 2007 Marine Corps Marathon and Miami this year, Rod has personally raised a total of $8,100.

A pre-dawn Sunday morning crowd of nearly 11,000 runners answered the call of the starter’s gun in front of American Airlines Arena at 6:15 AM to begin the journey over 13.1 or 26.2 miles. The course takes runners along South Beach, down the historic Venetian Causeway and through the Art Deco architecture district before splitting to allow the half marathon runners to finish in downtown Miami.  The marathon runners continue on to complete another 13.1 miles running to and from Coconut Grove.

Lauredo and his wife, Susan, proposed the idea to participate in the Miami event in 2006. Oliver, the younger of the couple’s two teen-aged sons, has Asperger Syndrome. Lauredo is motivated to both raise money and run by his son. In fact, it was Oliver who provided the inspiration to add the Marine Corps Marathon to his list.

OAR’s booth at the Health and Fitness Expo created a number of contacts within the local community to expand our presence in Miami. The ING Miami Marathon, Half Marathon, and 5K Race provides an opportunity for runners and walkers of any ability to participate in a world-famous destination. With that in mind, OAR intends to make RUN FOR AUTISM-Miami even bigger and better in the coming years.

Records Fall and Donations Jump in Houston

More than 20,000 participants, a race record, lined up on a weather-perfect morning on January 13 for the 36th running of the Chevron Houston Marathon trio of races. Among the records set, defending champion Dire Tune shattered her 2007 record by a staggering 2 minutes, 12 seconds for back-to-back victories in the marathon.

Just as or more motivated than the elite runners, a group of 25 runners participated and contributed donations for their efforts to OAR. With the support of Families for Early Autism Treatment (FEAT) – Houston, the RUN FOR AUTISM - Houston enhanced its presence at the Chevron Houston while raising a record $30,000.

Reverend James Grace, a first-time OAR runner, ran the full marathon this year in honor of his son James, and was thrilled do it for OAR. First-time marathon runner Ryane Broussard met her goals of finishing and being one of the top fundraisers. Returning runner Amy Pearson ran the half marathon with her college roommate while dedicating her run to her nephew, Cole.

Other marathoners included Doug Lance, who has a son with autism and assists as a coach for Houston Fit, one of the larger running clubs in the region, and Diego Gutierrez, also a member of Houston Fit. They are already planning to recruit more runners to make an even larger team next year and will launch that effort in earnest with a kick-off run this summer for this year’s team and others interested in joining RUN FOR AUTISM-Houston for 2009.

Airmen, Soldiers, Sailors, and Others Run for Autism in Iraq

Despite the demands of their duties in the War on Terror in Iraq, a group of American and allied servicemen and women still found the time and energy to go above and beyond for something more and launched OAR’s first RUN FOR AUTISM-Iraq.  This article was written by a public affairs officer on the base.

By Master. Sgt. Rob Wieland
407th Air Expeditionary Group Public Affairs


ALI BASE, Iraq. – As the sun rose high in the sky, more than 100 airmen, soldiers, sailors, and Coalition Forces partners lined up for the first Ali Base 6-kilometer RUN FOR AUTISM on January 21.

Organized by Senior Airman Valerie Johnson, 407th Expeditionary Logistics Readiness Squadron transportation specialist, the run held a special place in her heart because her son is affected by autism.

“Parker didn’t talk until he was 23 months old,” Airman Johnson said before the start of the inaugural event. “Then, he pointed at the Christmas tree while looking at its lights and said ‘blue, green, orange.’”

Before the runners started the event, special shirts were handed out to people whose family or friends had been affected by autism.

With a blast of the air horn, the runners set their pace on the 6-kilometer out-and-back course along the Ali Base runway.

“This was a great event for a great cause, I can’t wait to attend another RUN FOR AUTISM event at home,” said Airman Johnson.

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