A Director's perspective

Lori Lapin Jones is the mother of two sons, one of whom has Asperger Syndrome. She is also a member of OAR’s Board of Directors and the chair of the scholarship committee.

Lori Lapin Jones poses with her two sons (Charlie at left and Daniel at right) at Charlie's bar mitzvah.

Why it is that my two teenage boys have never been able to eat a meal at the kitchen or dining room table is beyond me, but after years of picking up after them, I finally put my foot down one day. In a voice which they have come to know means don’t dare challenge me, I set down the law: “There will be NO eating meals in the bedrooms.”

Nothing about this mandate was unclear. Or so I thought. The very next day I came home from work to find my younger son, Charlie, eating dinner on the floor just outside his bedroom as he watched the television that was in his bedroom. In a shrill voice that made the one the day before sound mild, I asked: “WHAT ARE YOU DOING?!” With a perplexed look and in a voice as clear and calm as could be, Charlie replied: “I am eating dinner. You said not to eat in the bedroom, so I’m not.” as he pointed to the line between the bedroom and hallway, implicitly noting that no part of his body was over the bedroom line.

In most households, perhaps, this would amount to a wise-guy move by a typical teenager. But in our home, and for an adolescent with Asperger Syndrome like my son Charlie, this was not a wisecrack, disobedience, or disrespect. It was nothing more than his literally obeying my directive to not eat in the bedroom. Welcome to the world of Asperger’s.

This month’s issue of The OARacle features several articles of interest to persons with Asperger Syndrome, their families, and others who support them in various community settings. OAR’s commitment in this area is meaningful as we focus not only on directly helping those persons with Asperger Syndrome, but educating those who teach them. Next month, OAR will release a first-of-its-kind DVD, which educates college professors on how to deal with a student with Asperger Syndrome (See the article below for more information). The DVD, intended to be used by the student to inform his or her teachers, provides concrete advice for professors from both our esteemed President Peter Gerhardt, Ed.D., and two individuals with Asperger Syndrome who successfully completed college despite the challenges presented by the disorder. The DVD will begin making its way to college campuses around the country in April and is available to you by contacting OAR.

OAR also recognizes that navigating the college classroom is not the only challenge for the college student with Asperger Syndrome. As challenging as the classroom may be, life on campus, and dorm life in particular, can be equally, if not more, challenging. To address this, OAR has partnered with Marshall University in Huntington, West Virginia, (see the story about Marshall’s Model College Program below) to produce a second DVD intended to do for the resident advisors in college dormitories what the first DVD will do for professors and teachers in the classroom. OAR’s estimated release date for the second DVD is August 2008.

Scientific Council member Brenda Smith Myles, Ph.D., has written an article for the April issue of the OARacle that focuses on one of OAR’s continuing program themes--informing others in the community about the challenges of autism and Asperger Syndrome. Dr. Myles targets medical professionals, doctors, nurses, and clinical staff with information and tips on understanding autism in order to help make medical appointments for those with autism successful for doctors, patients, and parents.

Next month, OAR will also conduct its first Scholarship Fund Drive. As reported in the January issue of The OARacle, OAR introduced the Schwallie Family Scholarship Program last year and awarded three $3,000 scholarships to individuals with Asperger Syndrome or autism pursuing a post-high school degree: one who was attending a trade school, one who was pursuing a two-year college degree, and one who was pursuing a four-year college degree. There was not a dry eye in the room when we presented those awards.

I was privileged to chair the Scholarship Committee. As I explained during the presentation, the awards were not being given because the individuals were on the spectrum, but because of how each recipient had dealt with the challenges of his or her diagnosis in navigating life and the world. I’m thrilled to report that the Schwallie family has again committed to funding three $3,000 scholarships and offered a challenge.  They will match up to $6,000, thus offering the potential to add four more scholarships this year.

Before we knew the Schwallies’ plans, our objective in establishing the Scholarship Fund Drive was to at least triple that $3,000 this year, increasing the number of scholarships from three to nine, if not more.  If we are successful, that total will rise to eleven thanks to the matching funds.  To apply for a scholarship, go to www.researchautism.org/news/otherevents/scholarship.asp. To make a donation to the 2008 Scholarship Fund, go to www.researchautism.org/support/donate/index.asp or send a check to OAR (Attn: Scholarship Fund).

I joined OAR’s Board of Directors almost three years ago with the hope that I would be part of implementing OAR’s mission—to fund applied research that focuses on the daily challenges of individuals with autism. That mission embraces those with Asperger Syndrome, and OAR’s commitment to these individuals could not be clearer. In 2006, OAR published Life Journey through Autism: An Educator’s Guide to Asperger Syndrome and dedicated a significant part of its annual conference that year to Asperger Syndrome. OAR has published numerous articles on Asperger Syndrome in The OARacle and has funded many studies that benefit individuals with Asperger Syndrome. OAR’s commitment to individuals like my son, Charlie, is real and unequivocally a meaningful part of OAR’s mission.

Speaking of Charlie, for those of you who might be wondering whether he is still eating dinner just over the bedroom divide--he’s not. On the third day, I came home and very calmly said: “Meals must be eaten at the kitchen table.” We haven’t had a violation since.

Enjoy this issue of The OARacle, and please give us your feedback.

Top

OAR Plans Release of First in Asperger DVD Series

On April 15, OAR will post Understanding Asperger Syndrome: A Professor’s Guide, to its Web site where it will be available for viewing or download. The first in a planned “Asperger Syndrome and Adulthood” series, this DVD is intended for use by college students with Asperger Syndrome as a tool to educate their professors, teaching assistants, and others on Asperger Syndrome, what it means to be a college student on the spectrum and how they might best be able to help them succeed. OAR produced the DVD in cooperation with the Global and Regional Asperger Syndrome Project (GRASP) and Pace University in New York City, thanks to a generous grant from the Schwallie Family Foundation.

“The idea behind this series,” said Peter Gerhardt, Ed.D., OAR’s president, “is to have adults with Asperger Syndrome teach, in effect, specific segments of the public about what it means to be an adult with Asperger Syndrome.”  To that end, Understanding Asperger Syndrome: A Professor’s Guide features as primary instructors two people with Asperger Syndrome, Michael John Carley (who also wrote the screenplay) from GRASP and Kiriana Cowansage, a New York University doctoral candidate in the Department of Neuroscience. In addition, Dr. Gerhardt appears in the DVD to provide information on the topic of “reasonable accommodations” in the college classroom.

Just over 12 minutes in length, A Professor’s Guide is a concise and highly accessible introduction to the topic. In addition to being posted on OAR’s Web site and YouTube.com, the Professor’s Guide will be produced on DVD and made available upon request through the Web site. In that way students will be able to provide some of their less-than-computer-savvy professors with a hard copy of the Guide that can be viewed in the absence of a high-speed Internet connection.

The next DVD in the series, A Resident Advisor’s Guide is currently being developed in collaboration with the Model College Program for Individuals with Asperger Syndrome at Marshall University in West Virginia (see the story on Marshall’s Model College Program below) and GRASP. The expected release date is October 2008.

Top

Focus On OAR Research

Reading Research: Examining the Effectiveness of Manipulative Letter Instruction

A teacher works one-on-one with a student, using the letter trays.

“Kids with autism often do have deficits in reading but those deficits have not been studied much,” says Maureen Conroy, Ph.D. She and her co-investigator, Paige Pullen, Ph.D., are conducting an OAR-funded, one-year study, “An Examination of the Effectiveness of Manipulative Letter Instruction on the Decoding Skills of Young Children with Autism Spectrum Disorders.” “As I work with youngsters with autism in the schools, I’ve noticed that many of them in classrooms with typically developing children get lost during teacher instruction. They don’t always realize the teacher is talking to them.” The study is taking place in Virginia where Dr. Conroy works at Virginia Commonwealth University and Dr. Pullen works at the University of Virginia.

The Manipulative Letter Instruction method that Dr. Conroy and her co-investigator, Paige Pullen, Ph.D., will be studying offers those children and others the chance to benefit from a reading instruction method that is concrete and provides active engagement. Developed by Dr. Pullen for children at risk for reading disabilities, Manipulative Letter Instruction offers a cost-effective and simple method for teaching children with autism how to decode words. As Dr. Conroy and Dr. Pullen wrote in their proposal, “Manipulative Letter Instruction involves explicit and systematic instruction in the alphabetic principle that makes the abstract concept of blending and segmenting phonemes more concrete for students. More specifically, the intervention focuses on the manipulation of magnetic letters to promote segmentation of words using the letters to represent the words’ constituent phonemes. The magnetic letter practice includes encoding (spelling) and decoding (reading) words.” (See the box to the right for a sample lesson plan.)

The two researchers hope to accomplish two goals with their study: to examine the effectiveness of Manipulative Letter Instruction on early literacy skills for children with autism spectrum disorders (ASD) who demonstrate deficits in decoding and to compare the effectiveness of the method to another method, Repeated Reading of Connected Text, on early literacy skills for that same set of children.

“Because there hasn’t been much research literature on reading for children with autism, we hope that this study will give us a better understanding of those children’s reading skills, both their strengths and needs,” explains Dr. Conroy. She and Dr. Pullen are also excited about the possibility of providing a low-cost, fun teaching strategy for teachers and families.


How the Study Works

A student uses the letter tray to work on his own.

The effectiveness of Manipulative Letter Instruction will be compared to Repeated Reading of Connected Text. A total of 20 students with ASD will participate in the research activities (10 students will be randomly assigned to the treatment condition and 10 students to the comparison condition). Students in each condition will receive 10 weeks of individualized instruction and outcome measures will be compared across conditions. Treatment integrity data will be gathered to assure that the interventions were implemented with integrity and social validity data will be obtained from the teachers and students on the usefulness and acceptability of the interventions.

The children in the two groups will have met a set of criteria, including having a diagnosis of ASD, being enrolled in the first through the third grade, demonstrating a readiness to learn early literacy skills but displaying a delay in phonological decoding, and having no other known co-occurring neurological or genetic disorders. The children will be recruited from two local school districts in Virginia, where Dr. Conroy’s and Dr. Pullen’s universities are located. Each child will be screened to determine that he or she meets the criteria.

The researchers will use two researcher-developed measures to evaluate students’ (1) rate and (2) accuracy of nonword decoding. In addition, they will use two subtests of the Woodcock Johnson III Diagnostic Reading Battery (WJ-III; Woodcock, 2001) post-test. The proposal explains that “although the WJ-III DRB is appropriate for assessing growth over a wide time span (i.e., one year), it is less effective for measuring growth over a short intervention period as in this study. However, administering the subtests at posttest only provides a standardized measure of specific reading skills with which to evaluate individual progress and compare groups.”

In addition, the researchers plan to evaluate the acceptability and viability of the intervention. Drs. Conroy and Pullen explained how the evaluations would be conducted in the proposal: “Classroom teachers will complete procedural acceptability forms that ask for feedback on procedures and the likelihood that they would implement the intervention in their classrooms for students with ASD. Additionally, the participants in the study will have the opportunity to provide feedback on the intervention through a post-intervention interview. According to Fawcett (1991), social validity techniques should include methods for participant self-reporting of social validation. Thus, research staff will conduct a post-intervention interview with the participants in [the Manipulative Letter Instruction group], which will allow the student to use the letters to demonstrate how he would use what he learned in the intervention in his reading.”


Getting the Word Out

Drs. Conroy and Pullen have planned a number of ways to disseminate the results of the study. In fact, they have already been accepted to present the findings at the conference of the Division of Early Childhood, Council for Exceptional Children. In addition, they plan to present the findings at two international conferences, one for the autism research community and another for reading researchers.

They also plan to conduct in-service training for Virginia school districts and create a teacher-practitioner manuscript in addition to a manuscript for the research community.

The two researchers look at this study as preliminary to larger studies. “What we hope is that this will provide us with data to say how effective the strategy is with children with autism so that we could apply for funding for a much larger study,” explains Dr. Conroy. Those future larger-scale research efforts could focus on examining the efficacy with a larger sample of students with ASD who display varying characteristics, such as ASD subtypes (autism, Asperger Syndrome, High-Functioning Autism, PDD), and across instructional delivery settings, such as group v. individual instruction. Without OAR, she adds, that would not be possible.

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?”

Top

News from OAR

April Launches OAR’s First Scholarship Fund Drive

OAR introduced the Schwallie Family Scholarship Program last year thanks to the vision and generosity of OAR Board member, Ed Schwallie; his wife, Marge; and the Schwallie family.  As reported previously in The OARacle, more than 85 individuals with autism applied for the three available scholarships.  In the judgment of the review committee, many of the applicants were deserving of the scholarships if OAR had more funds to use for this purpose.

In an effort to build on success and extend the program to as many deserving applicants as possible, with the generous support of the Schwallie family, OAR once again will conduct the first Scholarship Fund Drive next month.  April was chosen because it is National Autism Awareness Month and the applications for the 2008 scholarship awards are due April 25.

The Schwallie family is already creating more excitement.  In addition to funding three $3,000 scholarships as pledged, the Schwallies have offered to match OAR’s drive up to $6,000, which potentially puts OAR in a position to increase the number of scholarships from three to seven this year.  OAR will conduct the drive online via its Web site and informational mailings to interested friends of OAR.

According to Dr. Peter Gerhardt, OAR’s president and chairman of the Scientific Council, who helped the Schwallies design the program, the beauty of this scholarship program is its broad scope.  “Not everyone goes to college, especially four-year programs,” said Gerhardt.  “Ed, Marge, and their family wanted to encourage post-secondary educational opportunities  equally among students with autism pursuing undergraduate degrees, those in two-year associates degree programs, and individuals with autism seeking job training and certification to enhance employment opportunities.”

Anyone wishing to contribute to the Scholarship Fund can send a donation made payable to “OAR” with the words “Scholarship Fund” in the memo section of the check.  All donations OAR receives in this drive will be used exclusively to support this year’s scholarship awards.  Donations are tax-deductible.

Persons with an autism spectrum disorder who wish to apply have until Friday, April 25.  For complete application details, please visit OAR’s Web site, www.researchautism.org/news/otherevents/scholarship.asp.

Top

Research Review: Asperger Syndrome

by Peter Gerhardt, Ed.D.

Despite the increasing numbers of learners being diagnosed with Asperger Syndrome (AS), we continue to know relatively little about a number of aspects of the disorder. This, however, is beginning to change and this month’s article reviews highlight three very current articles examining the issues of sleep disturbances, long-term outcomes, and adaptation following incarceration in individuals with AS.


Sleep in Children with Asperger Syndrome

Research indicates, and many families would agree, that many young children with autism present with persistent sleep problems (e.g. sleep onset problems, fragmented sleep, or early awakenings). When it comes to children with AS, however, few studies have been published on this topic of significant importance to families, professionals and, critically, children with AS.

In this study, the sleep/wake patterns of 52 individuals with AS were compared to those of 61 typical learners (all subjects aged 5-17 years). Individuals in the control group were screened for psychiatric and somatic disorders before being accepted into the study. Parents in both groups were asked to complete the Sleep Disturbance Scale for Children (a 26-item Likert-type questionnaire) while the individual students completed a similar scale, the Sleep Self-Report Questionnaire. The results of both scales indicated that the frequency of sleep problems in children with AS was significantly higher than the frequency was in the typical control group.

Problems cited by parents included sleep onset problems, parasomnias, and daytime somnolence with, interestingly enough, sleep problems being more prevalent during the spring and summer. Problems cited by individuals with AS included sleep onset problems, too little sleep, sleep-related fears, nightmares, and a negative attitude toward sleep. Among the limitations of the study is the failure of the investigators to control for long term medication use or chronic/temporary illness either of which may have had an impact on sleep patterns. In addition, the extent to which the individuals with AS may have had more difficulty completing the self-report scale than did their typical peers is unknown and, as such, should be controlled for in any future attempts at replication.

In sum, the authors note that in clinical practice all children with AS should be screened for sleep problems, including sleep-related anxiety, so the problem specific treatments may be designed and implemented.

Paavonen, E.J., Vehkalahti, K., Vanhala, R., von Wendt, L., Nieminen-von Wendt, T., Aronen, E.T., (2008). Sleep in children with Asperger Syndrome. Journal of Autism and Developmental Disorders, 38, 41-51.


Asperger Syndrome and Autism: A Comparative Study After Original Diagnosis

In this prospective follow-up study from Sweden, the psychosocial outcomes of 70 males with AS (all with an IQ of >70; average age of 21.5 years) and 70 males with autism (most of whom—93%—had IQs of <70; average age of 24.5 years) were compared a minimum of five years beyond their initial diagnosis. Outcomes were rated as “good” if (a) the individual was employed or enrolled in higher education classes and (b) if over the age of 23 years, living independently. If 22 years of age or younger, the individual had to have two more friends/steady relationships to be rated as having a “good” outcome. A “fair” rating was given if either (a) or (b) were present. A “restricted” outcome was noted if the individual demonstrated neither (a) nor (b) and did not meet the criteria for a comorbid psychiatric disorder. A “poor” outcome indicted no independent social progress or the presence of a major psychiatric disorder and a “very poor” outcome rating indicated an inability to lead an independent existence and no clear means of communication.

The results indicated, first off, that the diagnosis of AS remained clinically valid for 84 percent of the group with only eight individuals no longer presenting with significant enough clinical impairment to warrant an ASD diagnosis. For the group of individuals with AS, 26 percent were rated as having either poor or restricted outcomes, a higher percentage than had been hypothesized by the authors. For the autism group, however, 76 percent were rated as having poor or very poor outcomes.

Of note is that seven individuals in the AS group (10%) were reported to have been involved with the criminal justice system but this was reported by the authors as being somewhat comparable to the rate for same-age, typical peers in Sweden. The nature of the criminal acts, however, was described as “severe” and indicative of the “lack of common sense that is one of the key issues in AS.” (p. 82) 

Neither the autism group nor the AS group, it seems, could be described as attaining optimal outcomes despite the potential full-scale IQ advantage of the AS group. As the authors note, “Medical, social, and occupational services must find ways to achieve more individually adjusted solutions so as to be more successful in meeting the needs of individuals with autism spectrum disorders.” (p. 82).

Cederlund, M., Hagberg, B., Billstedt, E. Gilberg, C.I., & Gillberg, C. (2008). Asperger Syndrome and autism: A comparative longitudinal follow-up study more than 5 years after original diagnosis. Journal of Autism and Developmental Disorders, 38, 72-85.


How Well Do Young Offenders with Asperger Syndrome Cope in Custody?

As noted in the previous study (Cederlund, et al, 2008), a percentage of individuals with AS will at some point become involved in the criminal justice system. In this article, the author offers two case studies focusing on how well (or poorly) individuals with AS adapt to the formal, and informal, structure of prison life in the United Kingdom. In the first case study, “Paul” is reported to be rigorous in his adherence to prison routines 18 months after his initial incarceration.

During his first year, however, he had been placed on “report” 17 times for a range of misdemeanors. Paul’s prison routine had been customized due to the fact that after lunch, he would often get agitated and, at times, aggressive, so, instead of remaining within the general population, he would return to his cell. While certainly effective in reducing agitation and aggression (with no one to hit, it is difficult to be aggressive), this imposed isolation was noted by the author as being of little, if any, therapeutic value. Further, Paul’s strict adherence to routines had, at different times, resulted in his smashing up his cell when his magazines were not stacked correctly and starting a fight with another inmate over a potential violation of prison rules. While Paul claimed to have friends in prison, the author’s observations indicated that other inmates interacted with him in a derogatory and disrespectful manner. In fact, prison staff reported having to intervene on Paul’s behalf on a number of occasions for fear of him becoming an unknowing and unwitting victim. At the conclusion of his sentence, Paul was released to live with his grandmother.

“Michael,” the subject of the second case study, is described as having AS and clinical depression. Further complicating matters is Michael’s physical stature (5’ 3”) and that fact that he is imprisoned for a sexual offense, both of which identified him to other inmates as a potential target for victimization. Michael’s rare attempts at interacting with other inmates generally resulted in conflict due primarily to social misunderstandings. As a result Michael tended to remain isolated in his cell, often times in violation of expected routine. Following reports of repeated victimization, Michael was removed from the general population for his own safety and placed in the hospital ward for most of the remainder of his sentence. While in the hospital ward, he generally remained isolated in his cell and the nursing staff reportedly found him stressful to work with due to his aggressive outbursts when he became frustrated.

The cases of Paul and Michael serve to highlight some of the significant challenges faced by adults with AS when they enter the criminal justice system and are incarcerated. From a misunderstanding of complex, informal social hierarchies to the learning of unfamiliar or non-preferred rituals and routines to avoiding/surviving assault to isolation as a therapeutic intervention, the challenges, risks, and potential for harm of prison life are significant. As such, significantly more research into ways to prevent initial, let alone repeated, incarceration is needed along with research into ways in which effective, therapeutic interventions may be provided in a prison environment.

Paterson, P. (2008). How well do young offenders with Asperger Syndrome cope in custody? Two prison case studies. British Journal of Learning Disabilities, 36, 54-58.

Top

Education Series : New York City Charter School Offers Local, Free, Quality Education

This article is the second in a series on innovative education programs for children with autism that will be featured in The OARacle in the upcoming months. OAR welcomes recommendations for other exemplary programs from the community.

At PS 50 in East Harlem in New York City, children with autism spectrum disorders (ASD) attend the New York Center for Autism Charter School, the first public charter school in New York State to exclusively serve children with autism. Located within a combined elementary and middle school, the school offers a model in education for children with autism.

First, because it is a charter school, children attend free of charge with families that wish to enroll their children in the school taking part in a lottery. Twenty-four students are currently enrolled and the school has capacity for 28 students ranging in age from five to 14. When it renews its five-year charter in 2010, school administrators hope to expand the upper age to 19.

Second, since it is located within a public school, numerous opportunities exist every day for inclusionary activities, from a peer mentoring program that brings children from the public school into the charter school to the opportunity for charter school students to attend classes in the public school.

Third, because it is the first charter school for children with autism in the state, it is more than a school for children with autism. It is a training ground for future educators and a model program for administrators and parents all over the state and from other parts of the country.


“All the Great Schools Were in New Jersey”

Ilene Lainer and Laura Slatkin, two New York City mothers, conceived the idea for the school after Slatkin’s son, now 8, was diagnosed with autism. In a New York Times article published shortly before the school opened, Slatkin said she was dismayed to find that all the great schools were in New Jersey. Bridget Taylor, Ph.D., executive director of the Alpine Learning Group, one of those New Jersey schools and the model for the New York Center for Autism Charter School, introduced her to Lainer.

They organized a group of parents to establish the New York Center for Autism, which is the umbrella organization for the charter school, in 2003. Jamie Pagliaro, the school’s executive director, said that, although the Center’s primary activity has been creating and running the school, its mission also includes biomedical research and community outreach to families with children who have ASD and the public.

The school, which uses applied behavior analysis as its underlying educational approach, opened with four students in September 2005 and added children gradually that year, ending with 12. There is a student-to-teacher ratio of one-to-one, says Julie Fisher, director of education. “At full capacity, each classroom has four children with one lead teacher, who is a certified special education teacher, and three instructors with bachelor’s degrees.” The school is ungraded and children are grouped according to the severity of their ASD.


“What Makes Sense for This Student?”

Education at the charter school is individualized according to each student’s needs, says Fisher. “What we ask is what makes sense for this student? What kinds of things are challenging? How can we teach that? We pick and choose for each student, based on what we know about his or her abilities.” In addition to academics, the instructors also work with students on self-care and daily living skills.

Parent participation is an integral part of the school’s philosophy. “We consider ourselves a partner with the families,” Fisher says. Each student has a clinic every month with the teaching staff working with the student while Fisher observes. Parents are encouraged to attend the clinic. “It’s a great opportunity for them to see what we’re doing, look through their child’s program book, and give us input on how things are going at home, what’s working and what’s not.” That input helps the teaching staff to prioritize their work with the student at school.

Teachers also visit the families at home monthly to see firsthand what the student’s home life is like. In addition, says Fisher, they can help parents with issues like sleeping or eating.


“Giving High Fives”

The charter school students attend school in the same building with 600 students at PS 50. “This offers us many opportunities,” says Pagliaro. One is that the charter school staff is always aware of what the teachers in the public school are doing, which keeps them cognizant of what the kids without disabilities are learning. “That influences both how and what our teachers teach,” he says.

An even bigger plus to the charter school’s site is the opportunity for kids from the charter schools and kids from the public school to mix. The charter school created a peer-mentoring program that trains students from the public school to work with students from the charter school. The 10-week training curriculum requires students to give up their lunch breaks and recess three days a week. When they have completed the curriculum, they can choose to continue working with their charter school peers. “Just about every student does continue,” Pagliaro says. At the conclusion of the training curriculum, each public school student also gives a presentation on autism to his or her class.

The inclusion works the other way too. High-functioning students in the charter school attend classes in the public school. Other charter school students eat lunch or take part in other activities. “It is so neat because it leads to natural interactions among the students. Peer mentors who know the charter school students say hi or give high fives to them in the hallway,” Fisher explains.


“A Big Part of Our Mission is to be a Model”

In addition to offering local, free, quality education to students with ASDs in New York City, the school also provides a model for autism education to teachers and educational administrators. “In the first three years,” Fisher says, “we are bringing in student teachers from schools in the area to intern here.” The school is also educating New York City public school officials on how charter schools like this one can work within the public school system. In the future, she says, the school plans to disseminate its practices and serve as a leadership training site for administrators and others who want to start new schools. The school currently hosts open houses and informational sessions at the school and sends staff to speak at conferences and other venues.

Pagliaro says the process that his school went through to receive its charter can help other groups that are trying to do the same thing. “We have pioneered the path. A big part of our mission is to be a model.”

You can find more information about the school at www.newyorkcenterforautism.com.

Top

Salute: Model Program Marries Independence and Support for College Students with ASD

It is a fine line to walk—allowing college students their independence while ensuring that they get the support and encouragement they need to complete their education. It’s nothing new.  College administrators and parents across the United States have been facing that challenge for years.  But for parents of people with autism spectrum disorders (ASD), walking that line can be even trickier. Today, as more and more persons with ASD attend college, they and their parents have to determine the balance between their special needs, the independence that accompanies college life, and the academic demands.

Marshall University is the first four-year university to offer those families a program tailored to the needs of students with ASD. Through its West Virginia Autism Training Center, which was established in 1983 by Dr. Ruth Sullivan and a group of families, the university offers a Model College Program, created in 2002. In addition to the model program, the Training Center, which is led by Executive Director Barbara Becker-Cottrill, provides a range of services state-wide to 1,480 registered clients.

According to Marc Ellison, program coordinator, more programs like it are springing up at other four-year colleges. “We probably meet once or twice a semester with colleges or universities interested in starting a similar program. The University of Alabama has created a program modeled after ours and there’s a similar program at Western Kentucky.”

He explains that “anyone with an ASD diagnosis can apply to be in the program. Students also have to apply separately to be admitted to Marshall. We want students to apply, because the program is highly individualized and we want the time to plan the supports that the student will need once he or she arrives.” He adds that the application process also enables program staff and students and their families to build relationships.

This year, 14 students are enrolled in the program and three students have graduated from the university since the program began. “The graduates generally take about five years to graduate,” says Ellison. “That’s typical for today’s college students.” He says that the program is informally capped at 20 students so staff can provide individualized, intensive support.


Providing Support as Needed…And More

An important feature of the program, Ellison explains, is that the support students receive is not based on physical location. In other words, there is no residential center or special dorms or classrooms. The program is predicated on the idea of support for students as they move through their college experiences, from going to class to making friends to attending social events.

The program focuses on providing support in just those areas: academic, social skills, and basic independent living skills.

The foundation of the program is the mentoring relationships between graduate assistants who work as the mentors and the students in the program. The mentors help students organize and stay focused on their academic responsibilities. This includes helping them develop and use planning supports, like calendars and checklists.

It also relies heavily on discussions, both individual and group, that help students explore concepts like reputation and socially acceptable behavior. “I talk to the students about what reputations are, how they evolve and change and can be broken down or built up,” says Ellison. “We also use social stories to talk about reputation.” The program staff also uses visual cues in the students’ dorm rooms and other places to remind them about what is socially acceptable and what is not. Ellison says the reminders may be about what kind of clothing is acceptable in public spaces in the dorm, for example.

Another key facet of the program is a skill-building group that focuses on building social skills. Led by Ellison, the program’s graduate assistants work with the students as a group to plan for and plan out social experiences that will help them build their skills and have fun while they are at Marshall. For example, the group might look at what social activities are available on campus and off, how much an activity costs, and how to get to it.

Ellison describes a common day for a student enrolled in the program: “The student meets with the graduate assistant he or she is working with in the morning to go over the day and talk about assignments, social and recreational activities, and anything else coming up. Then the student goes to class and meets again with the graduate student at the end of the day to debrief.” While that’s a typical day, someone from the program is always available to students if they are needed, Ellison says. And, he adds, staff gets concerned if they don’t see a student in more than 24 hours and willl go find the student to make sure everything is okay.


An Emphasis on the Individual

Ellison believes that what makes the program successful (and unusual) is its emphasis on individualized support. “Most universities have traditional disability services for students that are driven by students having to go to the office and ask for help. In this program, we seek out and constantly talk to students about what they need and what kind of supports we can provide to them. As simple as that difference is, it is what has made our program successful.”

Students and parents, he says, enjoy the sense of safety the program offers. In their evaluations, Ellison says, “students talk about knowing staff is going to be there to help and offer advice. They really appreciate that we help them keep all of the plates they have in the air spinning as they need to.” For parents, Ellison says, the program opens a channel to university staff, like professors. “University staff knows what is going on with their children, so parents know how things are going in their children’s classes and in other aspects of their school lives.”

Top

RUN FOR AUTISM News

RUN FOR AUTISM IN THE CITY THAT ROCKS

The RUN FOR AUTISM will descend upon Cleveland, Ohio, May 18, as OAR extends its autism awareness and fundraising efforts to the “city that rocks.” Officials for the Rite Aid Cleveland Marathon reached out to OAR at the end of last year in an effort to build their charity program and have autism represented. OAR answered the call with an enthusiastic “Yes!” and has set a goal of having at least 25 runners participate and raise $25,000 for autism research in this inaugural effort.

“Cleveland appealed to us for many reasons,” says Doug Marocco, OAR’s RUN FOR AUTISM director. “Cleveland adds balance to our schedule with a springtime event in a major city, and between its three races of varying length it has appeal for runners and even walkers.”

OAR sees the RUN FOR AUTISM as a unique opportunity to raise autism awareness and introduce OAR and its research and information programs to the autism community in Cleveland. Jerry Engel, OAR’s vice president of marketing and development, is leading that effort. “One of our primary considerations in choosing a new event is the potential to engage the local community,” said Engel. “As far as creating relationships in the state of Ohio goes, the immediate response has been terrific.”

The Cleveland Marathon features a 10K Race, half marathon, and full marathon. Runners of all levels, including runners who have already registered on their own, are welcome to be part of OAR’s first RUN FOR AUTISM – Cleveland. OAR’s plans include exhibiting at the Runners’ Expo on May 16-17 and celebrating the occasion after the race with the runners and their friends and family in Cleveland’s Charity Village.

For more information on the RUN FOR AUTISM - Cleveland, please go to http://www.researchautism.org/news/run/index.asp or send an email.


Two OAR 50-in-50 Runners Take on Boston

Jeff Hill crosses the finish line and qualifies to run for the Boston Marathon in April.

Running a marathon is quite an achievement. Running 50, one in every state, defies belief.  Doing both and qualifying for the Boston Marathon is simply amazing.  Even more incredible is that on April 21, Patriots’ Day in Massachusetts, two 50-in-50 marathoners, Greg Simpson and Jeff Hill, will represent OAR and autism as they check off another state by completing the world’s most famous marathon.

“Running for OAR is a great way to combine two of my passions: running andfighting autism,” says Jeff Hill.  “I unexpectedly qualified for the Boston Marathon last November.It has a lot of name recognition with donors and I figured that it might improve donor response.So far, I've had a very enthusiastic response.” He’s already raised more than his original goal of $2,620 (a symbol of a marathon’s length, 26.2 miles) and he expects to end his fundraising efforts for the Marathon at between $3,000 and $4,000.

The Boston Marathon will be Hill’s 64th marathon, thanks mostly to a self-set goal of running a marathon in under four hours in each of the 50 states. With the completion of a marathon in Hawaii in December 2007, Hill has now completed marathons in all 50 states. To reach his four-hour goal, though, he plans to revisit three states in May.

Greg Simpson has been featured in The OARacle before (read the article here).  Since his first marathon for OAR in October 2007, Simpson has crisscrossed the country as an OAR RUNner, running marathons in Hartford, CT; Philadelphia; Honolulu; Surfside Beach, TX; New Orleans; White Sands, NM; and Abilene, KS. Boston will mark his ninth marathon for OAR. With the help of Ed Schwallie, an OAR board member who decided to adopt Simpson as part of OAR’s Adopt-A-Runner program, Simpson has raised $4,365 so far.

“I have passed the halfway point completing marathons in more than 25 states and spread awareness of autism, OAR, OAR's RUN FOR AUTISM program, and raised funds for OAR,” says Simpson. “The more states I run marathons in, themore wonderful people I meet. It's nice getting to know others associated with OAR's RUN FOR AUTISM program. They really are special people.”

Simpson does his part to raise OAR awareness by bringing brochures to the marathons, wearing his OAR RUN FOR AUTISM shirt at pre-marathon events, wearing his RUN singlet throughout the marathons, and always talking up OAR and the RUN FOR AUTISM program.  After Boston, Simpson plans to run ten more marathons in 2008. He hopes to finish his 50th marathon in his home state of New Jersey in October, 2009. “I encourage others to run with me in that race,” he says. “It would be great to have a contingent of OAR runners there when I complete my 50th state.”

Simpson and Hill have yet to meet, but they share a common purpose.  “As the parent of a child with autism, it can sometimes be very frustrating because you want to ‘do’ something to fight the disease.”  Hill explains.  “OAR is well-organized, well-supported, and passionate about what they do. For me, as the parent of a child with autism [his son, Austin, 10], it was a natural connection,” Hill explains.

Like Simpson, Hill met OAR’s staff for the first time when he and his two daughters visited the Chicago Marathon Expo last fall.

“Running has a lot of advantages for me,” Hill says, explaining his unusual dedication.“I have a fairly stressful full-time job (I'm a CPA and it's tax season!), three children and, like a lot of people, very limited free time. So, running provides stress relief, time to myself to think and escape, avery efficient workout in a limited amount of time, and a chance to be outdoors. Marathons just provide a goal to train for and an excuse to visit each one of our states.”

Hill has been amazed at the generosity of his donors, mostly drawn from his family’s circle of friends and extended families. He plans to run the Chevron Houston Marathon for OAR in January 2009.

“Most of all, I hope that those contributors that have joined me in this effort will have their awareness raised about the impact of autism on both individuals with autismand their families,” he explains. “While the money raised is important in supporting research to fight autism, I would be really happy if some of my donors became advocates in the fight against autism.”

To donate or read more about Hill and Simpson, please visit their personal Web pages, www.firstgiving.com/jeffreyhill and www.firstgiving.com/50.

Top