MESSAGE FROM THE Chairman
"The Future Is Now!"

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Jim Sack, Esq. Chairman

”The future is now!”– Vince Lombardi

Once a year the executive director and newsletter editor invite me to write a “Message from the Chairman.” Typically, I recap the prior year, noting the highlights and new programs, then spend a paragraph or two talking about OAR’s plans for the next year or two. I’m not going to do that this year. Peter Gerhardt took care of the recap in his December Message when he described OAR’s “Top 10 Accomplishments for 2008.” [View the article here.] As to the future, it seems to me that Coach Lombardi’s words lend exactly the right perspective. They are meaningful in day-to-day terms for parents of children with autism and, therefore, serve well as a way to assess what OAR contributes to the cause. No matter how ambitious our plans for the future may be, it is what we do today that counts most.

We have been at it for seven years now and have much to be proud of in the way of accomplishments as Peter noted well last month. As impressive as OAR’s growing body of work may be, it’s fair to say that nothing OAR has done represents a major breakthrough in what we know about autism or provides that nugget of information that instantly transforms lives. That’s not the nature of autism or the potential of autism research today. For OAR, our work is more of a long, slow march toward a distant horizon than a rapid climb to a looming summit. That might lead some to reasonably ask, “Why bother?”

Just this month OAR received a note from a woman commenting on OAR’s Understanding Asperger Syndrome DVD for college professors and expressing the futility of it all. Her son with Asperger Syndrome had graduated from college with very good grades and a degree in what seemed to be a marketable business curriculum. Today, a year and a half later, he still hasn’t landed a job. Understandably disappointed, she wrote, “It doesn't really matter whether professors know how to treat these students or not… I, as a parent now realize that it doesn't matter howgood your child's school system is growing up, what college they get into, how they do in college, etc. The point is, no matter how we want to think that ‘if we just _______,’ our kid will get an APPROPRIATE job when they get out, this is not true… Sorry to rain on your parade.”

The Future Is Now! There Is No Future! Which Is It?
This mother’s frustration and emotions aside, her story speaks both to the essence and practical limitations of OAR’s (and other community-oriented autism groups’) mission. Just as a degree doesn’t guarantee a job after graduation and an OAR DVD doesn’t ensure academic success in college, nothing a parent or an organization like OAR does will eliminate uncertainty, risk, or the potential to fail in some endeavor. That doesn’t negate the value of such things, give one a reason not to try, or in the case of the young man in question, suggest that he will never get a good job.

We often define OAR’s mission in three short imperative sentences, “Raise money. Fund research. Change lives.” The last one is truly what OAR is all about. It is what drives us, but what does “changing lives” mean?  The story I shared serves as a lesson re-learned to many of us parents. Everyone loves a happy ending and that, more than anything, is what we want for our children whether they are on the autism spectrum or not. As this example shows, even when a person has had the benefit of a solid education and effective services and supports, neither jobs nor happy endings are guaranteed. Life, as we know all too well, is not fair. Nothing OAR does can change that reality; but that doesn’t mean we can’t do things to improve the odds of success.

When you come right down to it, that’s what OAR does—improve the odds. Whether it’s a parent or teacher constructively using the information from one of our guidebooks or our conference, a college student with Asperger Syndrome handing our DVD to a professor, a researcher funded by OAR examining ways to enhance treatment and intervention, or another person with autism attending college due in part to a scholarship from OAR, each is improving the odds of success, in his or her own unique way, of living with autism as an individual, parent, educator, or clinician. While those activities may seem very “every day,” that ordinariness is exactly why they are so important. As many times as we do things like that, as many lives as we touch, as many small “w” wins that follow, that is how OAR changes lives and ultimately measures success.

The legendary Chinese philosopher, Sun Tzu, noted, “A long journey begins with a single step.” Autism involves nothing if not a lifelong journey and an inestimable number of steps. The future IS now and it begins with the next step. OAR’s mission and continuing purpose is to positively change lives one step at a time. There may be no guarantees in that, but it remains well worth the effort for all of us at OAR.

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Focus on OAR Research
More Is What this Researcher Hopes For

More Independence, Inclusion, and Participation for People with Autism

Ultimately, says Dennis Reid, Ph.D., BCBA, what he hopes will result from his OAR-funded research project, “Training Paraprofessional Staff to Provide Proactive Support for Individuals with Severe Autism in Inclusive Settings,” is increased independence and participation in the community for children and adults with autism. “Our concern is to make sure one-on-one staff assigned to people with autism provide effective instruction to promote active participation in inclusive settings and that they don’t inadvertently strengthen problem behavior.”

A common strategy of agencies providing support in inclusive settings for individuals with autism at the severe end of the spectrum is to assign a staff person to provide 1:1 support. These personal instructors (PIs) usually have paraprofessional backgrounds and often receive minimal training in how to provide instruction during naturally occurring routines or how to reduce challenging behavior.

As the director of the Carolina Behavior Analysis and Support Center, a community-based agency that provides applied behavior analysis training and support for schools and community agencies, Dr. Reid says the agency “gets a lot of referrals, and we see a lot of problems with staff assigned one-on-one to people with autism. They are often assigned to promote inclusion but are not well-trained to achieve that goal.” Too often, in trying to stop a problem behavior, a one-on-one staff person inadvertently feeds into the behavior, Reid says.

The purpose of Dr. Reid’s proposal is to evaluate a means of training PIs to provide proactive support to individuals with severe autism in inclusive settings, including school classrooms, adult education programs, and supported work. “What we want is to be able to offer training that is evidence-based,” he explains. Dr. Reid hopes the project will be completed in about nine months.

Dr. Reid is working with Carolyn Green, director of special projects, Carolina Behavior Analysis and Support Center, and Marsha Parsons, director, Dogwood Resource Center. Green and Parsons, he explains, bring their training and experience as special educators to the project.

Methodology
To start, researchers will evaluate a group of PIs during their interactions with their assigned individuals with autism. Observations will focus on interactions involving antecedent (e.g., correct versus incorrect presentations of instructions and prompting) and consequence (e.g., correct versus incorrect responses to adaptive and challenging behavior) support. Observations of the performance of the individuals with autism will also be conducted regarding desired following of instruction, active-versus-passive participation in daily activities, and challenging behavior.

Once that evaluation is complete, the team will provide a performance- and competency-based training program to both individual PIs and small groups in a classroom format. Training will include information about proactive support strategies in general as well as information individualized to particular PI/learner pairs based on baseline observations of problematic interactions. To enhance practical application in typical applied settings, the classroom training will encompass less than one day.

Results
Reid hopes that this training will result in improved support provided by PIs, with corresponding improvement in the functioning of the individuals with severe autism. Information stemming from the investigation could then be applied by service providers to train new PIs and improve functioning of currently employed PIs and their learners in inclusive settings.

His proposal outlines the outcomes he and his colleagues expect from the study:

It is anticipated that results of the two experiments will show: (1) areas of performance warranting improvement among paraprofessional staff working as one-to-one PIs with individuals with severe autism in inclusive settings; (2) a means of training PIs both individually and in small groups that results in improvements in specified means of providing antecedent and motivational/consequence support and; (3) improvement in the functioning of individuals with severe autism in inclusive settings including, for example, better instruction-following behavior, increased independence in performing functional skills, more active participation in daily activities, and reduction in challenging behavior. It is further anticipated that, as a function of the investigation, the following outcomes will be derived.

Outcome 1: Availability of an on-site observation/assessment instrument to comprehensively evaluate the proficiency with which PIs provide proactive, antecedent, and consequence support in inclusive settings for individuals with autism at the severe end of the spectrum.

Outcome 2: Availability of a practical means of training PIs to provide effective antecedent and consequence support that improves PI performance.

Outcome 3: Improvement in the functioning of individuals with severe autism in inclusive settings including improved following of instruction, increased active-versus-passive participation in functional activities, and reduced problem behavior.

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SALUTE
Taking It to the TOp

Sarah Carter Climbs Mt. Kilimanjaro Raising Funds for OAR as She Goes

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Sarah Carter

“Climbing a mountain represents, for me, the challenges involved in better understanding autism,” explains Sarah Carter, 26, explaining why she linked her upcoming July climb of Mt. Kilimanjaro in Tanzania to autism.

Those challenges are something that Carter is very familiar with, since her younger brother, Aaron, was diagnosed with autism around 15 years ago, when they were both quite young. “Growing up and being very close to someone with autism is integral to who I am and what I have experienced throughout my life.”

It was more difficult then, she says, for families to find useful information about autism, which was not nearly as widely known. “There weren’t a lot of resources out there for my parents or the doctor. It was challenging for them to find support and a community of people to talk to.”

Raising Funds to Help Families Like Hers
“OAR provides practical and useful resources for parents and individuals with autism,” she says. “I appreciate that OAR focuses on evidence-based applied research -- how to ease some of the challenges that affect the lives of individuals and families touched by autism.”

While a student at Harvard, Carter wrote her honors thesis on the interface of philosophy and psychology and incorporated narratives from autistic individuals. “That’s when I first found out about OAR. I was impressed with its mission and the wealth of information it could provide for people who wanted to learn more about autism” Now, she says, OAR staff has been extremely supportive of her efforts and excited that she’s willing to use the climb to support its mission.

“Broadening our understanding of autism -- both in its biological underpinnings and in learning how to make the lives of individuals with autism easier, is a serious challenge. It will continue to require a significant amount of funding and well-planned research,” Carter says. She is eager to see research funding increased because, compared to other childhood disorders, the funding for autism is small.

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Sarah Carter's brother, Aaron, was diagnosed with autism 15 years ago. “Growing up and being very close to someone with autism is integral to who I am and what I have experienced throughout my life.”

The Mountain Waits
As for the mountain, Carter explains that the desire to climb it was born from watching an IMAX documentary about five years ago. “It was really inspiring to learn about the mountain and see the awe-inspiring footage of the climb. Trekkers hike through multiple ecosystems during their ascent to the summit.” And, she adds, there is no technical climbing skill needed. Anyone in reasonable shape can do it.

There is a definite physical challenge involved, however, and she is training to prepare herself. “Since it’s winter, most of my current training is at the gym, doing cardio and light weightlifting five to six times a week, coupled with a regular yoga practice,” she says. “My focus is to be as consistent as possible over the next six months.”

When she heads to Tanzania in July, it will be her first trip to Africa. Carter will do the climb through a trekking company. “I’ve never done anything like this. I’m especially thrilled to be climbing Kilimanjaro for a cause I believe in.”

Read about Carter’s preparations on her blog at http://firstclimb.typepad.com. To help Carter with her cause, visit OAR’s donation page and be sure to choose "Sarah Carter's Climb" from the Program Area drop-down menu. There’s also more about her climb on OAR’s website at www.researchautism.org/news/otherevents/AscentforAutism.asp

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News from OAR

Call for Nominations for the Jae Davis Memorial Award

After a three-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.

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’ have. 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 March 31, 2009.

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 and announce this year’s award recipient during April 2009.

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

Apply for the 2009 Schwallie Family Scholarships

The 2009 Schwallie Family Scholarship application period is now open. The submission deadline is April 24, 2009. To be eligible, students with an established autism or Asperger Syndrome diagnosis must be accepted for enrollment or pursuing undergraduate studies at an accredited institution of higher education in the United States during the fall 2009 semester. This can include four-year colleges or universities; two-year colleges; and trade, technical, or vocational training programs. For more information, please visit OAR’s Web site at www.researchautism.org.

Research Competitions Now Open

OAR is now accepting applications for both its annual Applied Research Grant competition and Graduate Research Grant competition.

Pre-proposals for applied research grants are due April 3, 2009. OAR seeks to fund research studies of one to two years in length that will produce practical results that promise some direct benefit for learners with autism spectrum disorders (ASD), their families, and related service providers. For more information on this competition, visit www.researchautism.org/professionals/grants/application/index.asp.

For graduate researchers, applications are due on June 5, 2009. This competition is intended to encourage and support students pursuing graduate and post-graduate studies in disciplines related to assessment, intervention, and support of learners with ASD and their families. To download the application, visit www.researchautism.org/professionals/graduategrants/application/index.asp.

DC Metro Residents Buzz About Health and Fitness Expo and OAR is There

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OAR's booth at the NCB4 Health and Fitness Expo

While the nation’s capital was abuzz with preparations for the inauguration of the 44th president as January began, it did not take away from the interest in NBC4 (WRC-TV)’s 16th Health and Fitness Expo held at the Washington Convention Center on January 10 and 11. The largest free health event in the country, this year’s Expo attracted 85,000 attendees who took advantage of the free cholesterol, blood pressure, glucose, vision, and other health tests and screenings.

OAR participated for the second year in a row, joining more than 245 businesses and non-profit organizations delivering health- and fitness-related information to the attendees.

“The Expo is truly a community event,” says Doug Marocco, OAR’s RUN FOR AUTISM director, who manned OAR’s exhibit booth both days. “There are activities for everyone on one hand and a great deal of good health information on the other.”

OAR staff members and volunteers had a great time at the Expo, speaking to visitors, passing out brochures, helping increase autism awareness among the attendees, and taking in the Expo themselves. They even managed to sign up a few potential runners for the RUN FOR AUTISM.

In an effort to promote autism awareness and the RUN FOR AUTISM, OAR sponsored a mile-long hike (equal to eight laps around the track) around the walking track on each day. Some 70 participants received a congratulatory certificate of completion and the chance to win an OAR gift bag. By the end of the day Sunday, more than 100 people had completed the OAR mile.

OAR Board of Directors member Greg Smith, who attended Sunday along with his wife, Cheryl, and daughter, Quinn, for the second time, commented, “It’s important to put autism on view for the greater community, so it’s good to see OAR and the OAR staff be part of an event like this.”

Volunteers Wanted for Military Families Project

In the October/November 2008 issue of The OARacle, OAR announced that it had received a grant from the American Legion Child Welfare Foundation to support the development of An Autism Guide for Military Families. [link to previous article] OAR plans to create a Web-based resource accessible to military families wherever they live and a companion, hard-copy resource guide intended as a personal reference tool for each parent and family. Now the work of producing these resources begins, and OAR is looking for volunteers to help with the project.

“We need people to help research what’s available through the military healthcare system; identify autism resources, schools, and support available at or near military installations; and help collect practical tips and suggestions on handling the many transitions military dependents with autism must face,” says OAR Executive Director Mike Maloney. “I’d also love to have a person or two acting as project coordinators, one to help oversee the hard-copy publication, the other the Web-based resource.”

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Research Reviews
Research in Autism Spectrum Disorders

by Peter Gerhardt, Ed.D.

The past decade has seen a significant increase in research on etiology, diagnosis, and intervention with autism spectrum disorders. In response to that increase, Elsevier introduced a new peer-reviewed journal in 2007, the mission of which is to publish high-quality empirical articles and reviews with a primary focus on applied topics. The latest edition of this journal, Research in Autism Spectrum Disorders, serves as the source for the three articles selected for review this month. This should be of particular interest to readers as the entire first edition of Volume 3 (2009), including full copies of the articles reviewed, is available for free online at www.sciencedirect.com/science/journal/17509467. Happy reading!

Trends and Topics in Autism Spectrum Disorders Research

With the increase in diagnosis of autism spectrum disorders (ASD), there has been a corresponding increase in ASD-related research and an ever-increasing number of related publications. Matson & LoVullo identified 17,615 ASD-related articles published between 1973 and 2008. During that time, autism, as one might suspect, has been the specific focus of research nearly five times more often than all other ASDs (including childhood disintegrative disorder and Rett’s Disorder) combined. Of particular interest, the authors note, is the small number of articles related to PDD-NOS. While this may suggest an urgent need for more research in this area, that may not be the case. In reality, much of the research related to autism, particularly when it comes to assessment and intervention, may pertain to PDD-NOS as well. Nonetheless, this is an empirical question and, as such, the identified research gap remains problematic.

As part of their review of the literature, Matson and LoVullo categorized the articles into topic areas. To do that, a team reviewed a representative sample of published papers and placed each into one of 21 categories based on the content of the paper. The larger categories included genetics, neurobiology and physiology, social skills, diagnosis, pharmacology, and challenging behavior. Of these, genetics was the most frequently studied content area with just over 15 percent of the surveyed articles falling in this category. Surprisingly, the least researched of the 21 topics identified by the authors was early intensive behavioral intervention (EIBI).

In a final step, the researchers grouped the 21 topic areas under three broader headings: 1) basic causes/psychological process, 2) diagnosis/epidemiology, and 3) treatment. Of particular interest to OAR and its applied research focus, the treatment group contained the fewest number of studies, leading the authors to note that there is a “particularly big shortfall in intervention research […] with respect to behaviorally based methods for early childhood, adolescents, and adults, and for parent training” (p. 256). In other words, OAR’s focus is well placed, and there is much more research to be done.

Matson, J.L., & LoVullo, S.V., (2009). Trends and topics in autism spectrum disorders research. Research in Autism Spectrum Disorders, 3, 252-257.

Comparison of Behavior Intervention and Sensory Integration Therapy in the Treatment of Self-Injurious Behavior

Devlin and colleagues investigated the comparative effectiveness of sensory integration therapy (SIT) and behavioral intervention on the rates of self-injury (hand biting/mouthing) as displayed by a young boy with autism. The use of sensory integration interventions (i.e., sensory diets) is a common clinical practice with children with autism. However, it also has a limited research-base in support of its more general use. The focus of their investigation was a 10-year-old boy, diagnosed with autism at 3 years old, who demonstrated limited cognitive and communication skills and was taking Tegretol for a seizure disorder at the time the study began.

Initially, the researchers completed a functional analysis, which indicated that his self-injurious behavior (SIB) was maintained by negative reinforcement (i.e., escape from demand situations). As such, the research team developed a behavioral intervention that included interspersed requests (the mixing of difficult and easy tasks) coupled with a dense schedule of reinforcement and an extinction procedure. Conversely, the sensory integration therapy consisted of a combination of swinging, beanbag compression, rocking, jumping, brushing, joint compression, access to a chewy tube, and deep pressure.

The study used an alternating-treatments design (changed across daily sessions) with an initial baseline and final best treatment phase. In this case, the results indicated that behavioral intervention was more effective than SIT for the treatment of SIB. During the final, best treatment phase, the boy received only the behavioral intervention and his SIB decreased to just two incidents per day (compared to 13 incidents per day at the start of the investigation). The findings further highlight the importance of providing function-based behavioral intervention for challenging behavior. Further, the authors note, while some may view SIT as a promising treatment, there is an insufficient body of adequately controlled research upon which to base a definitive conclusion at this time.

Devlin, S., Leader, G., & Healy, O. (2009). Comparison of behavior intervention and sensory integration therapy in the treatment of self-injurious behavior. Research in Autism Spectrum Disorders, 3, 223-231.

The Use of Social Stories by Teachers and Their Perceived Efficacy

Social Stories™ are a widely popular social intervention with individuals with ASD despite a somewhat limited research base. In this study, Reynhout and Carter sought to determine the characteristics of the children using Social Stories, how extensively teachers employed them and for what types of behavior, and the teachers’ attitudes regarding their use and efficacy. To do this, 45 teachers in New South Wales, Australia, completed a four-part questionnaire and provided the researchers with two Social Stories they had recently used.

These submissions allowed researchers to assess compliance with the criteria put forth by Carol Gray (2000), the developer of Social Stories. Of the 105 questionnaires mailed, 45 were returned (a response rate of 43 percent). Nine respondents provided only one example, resulting in a total of 81 sample Social Stories for review. The results indicated that teachers used Social Stories with their students across the age and ability spectrum and for a very broad range of behavior (e.g., accept change, explain others’ behavior, reduce behavior, and teach academic skills). As to how and why teachers used Social Stories, the responses supported the notion that teachers use Social Stories because they are easy to construct and implement, applicable to a wide range of behavior, and potentially effective. Interestingly enough, analysis of the sample stories showed that many of them bore little resemblance in terms of construction and implementation to the Social Stories described by Gray (2000). One of the reasons noted for this discrepancy was that 29 percent of the respondents had never had any training in the development and implementation of Social Stories.

As to acceptability and efficacy, respondents in general viewed Social Stories in a very positive way, but there was less confidence regarding the maintenance and generalization of any realized behavior change. Surprisingly, teachers viewed Social Stories as effective for individuals with autism independent of cognitive ability, level of autism, or receptive language skills. Additionally, they considered expressive language skills integral to the success or failure of Social Stories. (As the authors note, however, clinical popularity does not necessarily equate to actual efficacy.)  Given the popularity of Social Skills as an intervention, the apparent significant diversity in their implementation, and concerns for generalization and maintenance of perceived treatment gains, Reynhout and Carter discuss the need for further research.

Reynhout, G., & Carter, M., (2009). The use of social stories by teachers and their perceived efficacy. Research in Autism Spectrum Disorders, 3, 232-251.

Gray, C. (2000). Writing social stories with Carol Gray. Arlington, TX: Future Horizons, Inc.

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Update on OAR Research
Growing Up on the AUtism Spectrum: A Parent Education and Skill-Building Program

In 2006, as part of its Applied Autism Research Competition, OAR provided funding to Shana Nichols, Ph.D., Fay J. Lindner Center for Autism/NS-LIJ Health System. She proposed to create a unique program to “evaluate the effectiveness of a parent curriculum in targeting not only the needs of youth with autism spectrum disorders (ASD) regarding sexuality development, but also the needs of their parents in reducing stress and increasing parents’ sense of competence in dealing with this difficult set of issues.”

This January, Dr. Nichols reported that the study has met its primary objectives, including increasing parents’ comfort level with the topic and their ability to talk with their children, their children’s physician and others about sexuality. In addition, the study measured parents’ reports of their children’s vulnerability at the beginning and at end of the study, finding that vulnerability overall had decreased. Researchers also measured the parents’ knowledge, sense of competence and skill level related to parenting and sexuality, which increased at the end of the 10-week curriculum.

The most difficult aspect of the study and deserving of future exploration was goal setting, reports Dr. Nichols, explaining that the researchers asked parents to set a small number of concrete goals to accomplish during the class. Examples of such goals included: for my child to start showering every day or to visit the gynecologist for the first time. “It was difficult for parents to set goals that were concrete enough,” she says. When parents were able to set measurable goals, most made significant progress toward those goals over the course of the group and at follow-up.

The results of the study are being disseminated through poster and oral presentations at local, national, and international clinical and research meetings, including the Autism Society of America and the International Meeting for Autism Research as well as in journals and other publications. In addition, Dr. Nichols has been asked to give workshops for school districts and parent organizations to assist educators and families in supporting healthy sexuality development for youth with ASDs.

Need-to-Know Information for Parents, Educators, and Clinicians
A major goal of Dr. Nichols’ sexuality and growing up program is a group manual that clinicians and educators can use with parent groups. Dr. Nichols and her colleagues hope to produce a series of manuals and books about children growing up on the autism spectrum aimed at parents, educators, and clinicians, she says. In addition, a series of books are in progress for youth themselves to read, as there are few resources available that are accessible for individuals with ASDs.

The first book in that topic area was written by Dr. Nichols and colleagues and published in December 2008 by Jessica Kingsley Publishers. Girls Growing Up on the Autism Spectrum: What Parents and Professionals Should Know about Pre-Teen and Teenage Years offers information for parents of girls with autism on what to expect during puberty; how to deal with sexuality, personal safety, and social skills; and more. “There’s so little out there for parents of girls with autism,” she says. “The book is based on our experiences working with females with ASDs and developing a growing-up program for girls.”

In fact, one of her graduate students, Matthew Roth, received a grant from OAR to evaluate the effectiveness of a growing-up group for adolescent males with ASDs. The results of that study, along with others, will be turned into a book for teenagers on what to expect in adolescence.

Dr. Nichols is looking ahead to her next projects, one of which is developing a joint group for parents and their adolescent children and another that will focus on a program for the parents of children with autism who are less cognitively able. “Lots of people think sexuality isn’t relevant for those kids but it is. Parents and kids need to be prepared for puberty and the feelings and experiences that come with it.”

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Profile
Wholly Committed: Eden II/Genesis Serves Its Families Beyond 9 to 3

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Eden II/Genesis offers programs for all ages. This preschool room is all set for its students.

“We serve the whole family and make a commitment for the life span. If they need our programs when the person with autism is 15 or 40, they will be available. We believe that you have to serve the family more than 9 to 3 or 9 to 4 every day. We work at helping the family during the weekends, through holidays, whenever they need us,” says Executive Director Joanne Gerenser. And that commitment, she says, is what sets The Eden II/Genesis Programs apart.

Created by parents in 1976, the Eden II School for Autistic Children opened with six students, one special education teacher, and a director. Modeled after the successful Eden Institute in Princeton, New Jersey to which it has no formal ties, Eden II grew rapidly through the 1970s, 80s, and 90s. Today, Eden II has two school programs, a preschool program, an adult services program, children and adult residential services and an extensive family support program. In 1995, Eden II expanded to Long Island with The Genesis School, which includes a school and services like those offered by Eden II.

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Eden II/Genesis Running Club members take a break to have their photo taken.

Eden II/Genesis remains a family-driven organization, with more than 300 families making use of the programs’ services. Staff also provides outreach services to school districts and families outside of the New York City area, which adds another 100 or so families to the total number served. Because Eden II/Genesis has been in operation for so long, says Gerenser, it can offer newer organizations expertise in programs serving adolescents and adults.

Moving Forward to Meet the Needs of Families

Gerenser attributes the programs’ growth to the fact that the organization has relied on evidence-based practice, particularly applied behavior analysis (ABA), since it started, which was unusual in the mid 1970s. “Even the way we deal with staff is through evidence-based practice,” she says.

Eden II/Genesis has a partnership with Yankee Stadium that allows its participants to work in a recycling program.

The organization also doesn’t rest on any laurels, despite its growth. “Five years ago, we put a quality improvement program into place for everything we do from human resources to the preschool. Each component of our programs has a plan that ensures we are always looking for improvements to do what we do better,” Gerenser explains.

As part of its commitment to serving the whole family beyond the 9-to-3 school day, Eden II recently set up an overnight respite center with two beds. One is for emergency respite, when there is a crisis at home or a parent needs to be away. The other bed can be reserved for times when a family needs to get away on vacation or for some other event and cannot take the person with autism along. “Every family gets a week if they want or need it,” says Gerenser, adding that even for families who may never need it, “knowing it’s there has enhanced the quality of life.”

Despite the economy and the resulting slowdown in funding, Eden II/Genesis has plans for expansion. “We are in the process of developing two new group homes, one at Staten Island and the other on Long Island. The home on Staten Island will serve six young women and will be the program’s first all-female residence.”

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RUN FOR AUTISM News

Cleveland Offers RUN FOR AUTISM Participants Race Options

Whether you want to go the full marathon distance running all the way or walk your way through a 10K, the Rite Aid Cleveland Marathon offers RUN FOR AUTISM participants options and a course they will love. So join us on May 17, 2009, for the Rite Aid Cleveland Marathon, Half Marathon & 10K.

OAR added this event to its list of charity partner races in 2008, and based on the enthusiasm of last year’s runners, OAR has set a goal of having at least 25 runners participate and raising $15,000 for autism research.

With three races of varying length to choose from, the Cleveland Marathon, Half Marathon & 10K appeals to both runners and walkers alike. In fact, the race has a specific registration category for walkers. In addition, participants are drawn to the relatively flat course and great views of downtown Cleveland’s major landmarks, including the Rock and Roll Hall of Fame and Browns Stadium.

Members of the OAR staff will be on site at the Runners’ Expo on May 15-16 and at Cleveland Charity Village area near the finish line area on race day to help team members celebrate their accomplishment.

Registration for this event is now open. Runners interested in participating with OAR can receive a special discounted rate when they sign up at www.clevelandmarathon.com. Please visit www.researchautism.org/news/run/index.asp and click “Events” for more details and to access the discount code.

For more information on this or other opportunities to be part of the RUN FOR AUTISM - Cleveland team, visit www.researchautism.org/news/run/index.asp or contact OAR’s RUN staff at (866) 366-9710 (toll-free) or e-mail: run@researchautism.org.

Reserve Now To RUN with OAR in the NYC Half, the Chicago Marathon, or the Marine Corps Marathon/10K

OAR has entries to some of the year’s most anticipated running events:  the NYC Half Marathon on August 30, Bank of America Chicago Marathon on October 11, and Marine Corps Marathon/10K on October 25. These popular races are expected to sell out quickly, so runners are encouraged to take advantage of this special opportunity to reserve a space today.

Once again, OAR is an official charity partner with two of the largest marathons in the country, and expects to have large RUN FOR AUTISM teams at both the Bank of America Chicago Marathon and Marine Corps Marathon in October. For the most complete RUN FOR AUTISM team experience, consider joining one of these two events. With their Runner Recognition dinners and pre/post race support, both races provide the opportunity to join a large group of individuals committed to raising money and awareness for autism.

OAR also has a very limited number of spaces for the popular NYC Half Marathon. Entries for this exclusive event are only available through lottery system or by running with a charity such as OAR. Runners are already lining up to be a part of OAR’s team, and entries are expected to be in very high demand, so sign up today.

For more information or to sign up for any of these events, please go to www.researchautism.org/news/run/index.asp or e-mail run@researchautism.org.

The Marine Corps Historic Half and Semper Fred 5K Is Looking for YOU!

Don’t miss your chance to join the RUN FOR AUTISM team and raise money for autism research. OAR has a limited number of entries for the second running of the Marine Corps Historic Half on May 17, 2009.

Race day will feature a Half Marathon that winds through the historic streets of Fredericksburg, VA, as well as the Semper Fred 5K for those runners looking at doing a shorter distance.

The event will also feature a health and fitness expo at the Fredericksburg Convention Center on Friday and Saturday prior to race day.  Come for the race and see history on the course and take in the many events that are part of the Historic Half weekend.

If you are interested in competing in the Marine Corps Historic Half or any of our other events please contact us: run@researchautism.org or 1-866-366-9710.  Find more information about the RUN FOR AUTISM on our website at: www.researchautism.org/news/run/index.asp.

RUN FOR AUTISM runners for the New York City Half Marathon, Chicago Distance Classic, and Marine Corps Marathon proudly display their medals of accomplishment--for running and raising money for OAR.

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Goofy, Yes; An Achievement, An Even Bigger Yes

Jennifer Morrison, pictured here after completing the 2007 Chicago Marathon

In the November/December 2007 issue of The OARacle, we profiled Jen Morrison, marathon runner and mother of three sons with autism. At the time, she was training for the Chicago Marathon and working just as hard to raise money for OAR. Today, with three marathons, three half-marathons, and one Olympic-distance triathlon under her belt, Morrison has achieved another goal: The Goofy Challenge, a marathon and a half, which she did on January 10 and 11 at Walt Disney World.

While it may sound, well, goofy, it’s actually a physical test that includes a half marathon on Saturday and a full marathon on Sunday. Morrison was proud to report that she came home with three medals, one for each of her sons, Tripp, Wheeler, and Tate. “On Saturday, you run the half marathon and receive a Donald Duck medal if you finish in regulation time. On Sunday, you run the full marathon and receive a Mickey Mouse medal if you finish in regulation time. And, if you complete both on successive days in regulation time, you have successfully completed the Goofy Challenge and are also awarded the Goofy medal.”

In 2007 and 2008, Morrison says she raised just over $9,000 total for OAR, which includes the Goofy Challenge. She hopes that others will take on the Goofy Challenge and other RUN FOR AUTISM events for OAR in coming years. “There may have been others running for autism but it seemed to me as if I was the only one representing any autism-related charity at Walt Disney World Marathon Weekend,” she says.“I find it alarming that autism is so pervasive in society, and yet still overlooked in so many spheres. My goal is to help promote the RUN FOR AUTISM to the extent that I can spot an OAR jersey at every major athletic event I attend.”

As for her children, they are “still the coolest kids on the planet!” Morrison reports that “Tripp is six and mainstreamed in a kindergarten class with an aide. Wheeler is four and had a host of emerging issues this fall, but, for once, I had an answer for his troubles. Unrelated to autism, I found out he is anemic, and simple iron therapy has helped to improve both his energy level and his mood. This newfound balance has made him happier and more well adjusted in school. Tate is three and has received both his official medical and educational diagnoses of autism. He is responding remarkably well to school and continued therapeutic intervention, and will not be ignored!”

Our hat’s off once again to Jen and her three boys!

Jen Morrison's three sons, Tate (left), Wheeler (center), and Tripp (right) show off their mom's Goofy Challenge medals.

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