On Autonomy, Generalization, and Problem-solving

by Bobby Newman, Ph.D., B.C.B.A.

Last Halloween, I helped to supervise a sleepover party for the children at the Unitarian-Universalist church my family attends. I had been wrapped in toilet paper by the kids during the “make a mummy” contest, guided numerous kids through the dark to the hallway where the bathroom was lit up, and finally watched the movie end and the kids settle into their sleeping bags for the night.

Now, I thought to myself, it was time to get some program writing done on my laptop. I was a good five minutes of concentration time in, when a small voice asked me what I was doing. I looked up from the screen and saw one of the precocious six-year-olds who had attended the party. I always got the vague feeling that I would be working for some of these kids one day. I also had the strange feeling of being the Grinch and looking at little Cindy Lu Hoo, even if I wasn’t stealing Christmas stuff. You just weren’t supposed to have deep conversations with such young children this late at night.

I explained that I was designing some plans for a project at work. We had created a “snack cart” business at the agency where I consulted, a project that I hoped would settle into a self-sustaining enterprise that would employ some of the people diagnosed with autism who wanted to work in the business. I was helping to design programs to teach some of the people who were going to work there how to do their jobs.

“Why?” came the inevitable question. It was a question that would be repeated many times during our conversation that night.

I said something to the effect of: “Well, some of the grown-up people who are being served by the agency really weren’t taught the skills that they need to hold a job when they were in school. They never learned how to ask for help if they didn’t know what to do, or how to follow the schedules, or how to perform some of the job skills, or things like that.”

“Why not?”

I told her I wished I had an answer to that question.

“But if they never learned how to have a job, how did the people at their schools expect them to be able to live on their own like other grown-ups?”

I did my best Shrek imitation: “A fair question.” I internally debated discussing what kind of life faces those who don’t develop independent skills. It’s a life where other people make all your life’s decisions for you. Where will you live? What will be your (limited) choices of food? What will be your (limited) choices of recreation activities? When will you go to bed? With whom you will share your living space? How will you spend your days? As usual, the kid was way ahead of me and pointed out many of these facts to me. I nodded in agreement. The Unitarian-Universalist poster on the wall about respecting the worth and dignity of every individual provided additional silent assent.

Stimulus Generalization

Whenever anyone asks me what the point of behavioral and educational programming is, my answer is always a quick “to build autonomy.” When someone has skills, they have choices. When someone lacks skills, they lack choices. In such a case, life’s decisions are inevitably made for the individual, and even if other people have the individual’s best interests at heart, there is just no substitute for being able to make one’s own decisions and living an independent life.

Now firmly hooked and thoughts of sleep gone, the little girl asked for more detail about what I was doing. I was writing about generalization, I said. Making up a pseudonym to protect privacy, I told her about one of the employees of the snack cart business who was able to perform many of the skills related to conducting the business but only while at the training site. When he moved from there into the “real world,” it became more difficult. I was working on what we would call “stimulus generalization,” the ability to perform a skill that has been taught under one set of circumstances in a new situation.

“Like being able to kick the kick-ball on the playground the same way that you do in the gym.” I agreed that she had provided a terrific example. Those of you who like more academic material can check out Harding, et al. (2004) for an excellent and equally fun example. Of course, you should go back to Stokes & Baer (1977) to see the defining paper on generalization and begin working your way from there, tracing the literature as it has developed and matured.

As is often pointed out, generalization of skills can neither be assumed, nor hoped or prayed for. Failure to generalize is often reported in the applied literature. You must explicitly program for generalization by teaching under the wide variety of circumstances and situations the person will face. Learning how to make change or sell the product in our training situation is one thing. Learning how to do it in real time in the hallway of the office building with a stranger is quite another. We cannot hope for or assume the generalization of the skill; we must program for it by teaching under a variety of teaching situations and stimuli.

Response Generalization

 “So will the person always do the same job? Or do that job the same way all the time? That sounds boring!”

Again my miniature, future behavior analyst was ahead of me.

“No, we try to help people to learn how to do all the jobs, and to mix up how they do the jobs so that they don’t get bored.”

In truth, this issue of response generalization is every bit as important as stimulus generalization. Think of George Carlin’s routine about saying good-bye to 20 people at a party. As you move down the line saying, “OK, hey, take it easy….ok, hey, take it easy….ok, hey, take it easy,” you may seem a little uncreative (at best). If I remember the routine correctly, George announced that every month, whether he needed to or not, he would change the way he would say good-bye. People would then ask, “Didn’t you used to say “ok, hey, take it easy?” George would reply with something to the effect of, “Yes, I did, but not anymore. Now I say “FAREWELL!  Farewell until we meet again!  May the forces of evil become confused on the way to your house!” He finished the routine by noting that “people will remember you if you talk like that!”

While such flowery speech may not be necessary, or even always desirable, the comedy makes a good point. Boredom issues aside, it is true that some variety in behavioral responses is expected by the population at large. Perhaps even more importantly, someone who cannot vary what he or she is doing may have a great deal of difficulty adapting to changing situations. Our workplaces are in constant change. New technologies make old jobs obsolete or require new ways of performing old skills.

To think of this in concrete terms, what do you do when a transit strike makes getting to work in the old way impossible? What do you do when a computer that has never been used before is introduced to track inventory? How do you change over to a bar code system? How do you go about seeking out information that will allow you to adapt your behavior to new situations? What happens when a new supervisor wants to change the way things are done? Again, for those of you who insist on academic references, check out an interesting example from Ludwig and Geller (1997).

Please note, of course, that these twin issues of stimulus and response generalization are ones that we all face, more or less successfully. If I may be allowed one of my characteristic “House, M.D.” moments, I often find myself discussing with staff members just how well they are generalizing their own skills. I remember one psychologist I was helping to train who would frequently ask questions regarding how to proceed with a given issue (a functional behavioral assessment or a curriculum modification, for example). After answering his questions appropriately several times, I eventually found myself responding to questions by saying “OK, now what did we do when we were in this exact same situation all those other times?”

My sleep-avoidant charge and I did not solve the problems of the world that night. We did agree, however, that people have to learn how to perform their old skills even when situations change and have to be able to change what they have been doing in order to suit new situations. Not bad for a guy who had been wrapped in toilet paper two hours before and a six-year-old who was three hours past her bedtime.

Harding, J.W., Wacker, D. P., Berg, W.K., Rick, G. and Lee, J.F. (2004). Promoting response variability and stimulus generalization in martial arts training. Journal of Applied Behavior Analysis, 37, 185-196.

Ludwig, T. D. and Geller, E. S. (1997). Assigned versus participative goal setting and response generalization: Managing injury control among professional pizza deliverers. Journal of Applied Psychology, 82 (2), 253-261.

Stokes, T. F. and Baer, D. M. (1977). An implicit technology of generalization. Journal of Applied Behavior Analysis, 10, 349-367.

Top

Fourth Oar Conference Focuses on "What is Working in 2006"

At the end of October, OAR will once again bring together some of the most respected researchers and practitioners in the field to talk about the current state of applied research in autism for an audience of people with autism, parents of children with autism, practitioners, researchers, and others. The two-day conference will take place at the Hilton Towers in Arlington, Virginia, beginning with a welcome by OAR President Peter Gerhardt, Ed.D., at 8:30 a.m. on Friday, October 27, and ending with a closing session at 3:50 p.m. on Saturday, October 28.

"This is the premier event in the area, if not the country,” says Gerhardt, “for evidence-based interventions with applications in the home, classroom, and across the person’s lifespan. For me, the highest compliment we have ever received about the conference was from a parent who thanked us for not wasting his time talking about stuff that just doesn’t work.” Gerhardt says that OAR keeps the focus on “what research tells us is working as of 2006.”

For the first time, speech pathologists and behavior analysts will be able to get continuing education units for their participation in the conference. The two-day conference will include four tracks, Research and Research to Practice on Friday and Language and Academic Instruction on Saturday.

Keynote Speakers

Gina Green, Ph.D., will open the conference with a talk about the quality of the evidence in autism intervention. She is currently in private practice in San Diego as a consultant and is on the faculty at San Diego State University and the University of North Texas. She has written numerous publications, including co-editing Behavioral Intervention for Young Children with Autism and Making a Difference: Behavioral Intervention for Autism. Dr. Green lectures and consults widely on autism and related disorders, behavioral research, and effective interventions for people with disabilities.

Bridget Taylor, Psy.D., BCBA, will give the keynote address on Friday afternoon, discussing how to promote independence. Dr. Taylor has specialized in the education and treatment of children with autism for the past 19 years. In 1988, she co-founded the Alpine Learning Group, a well-regarded education and treatment center for children with autism in New Jersey and currently serves as executive director. Dr. Taylor has served on the editorial board of the Journal of Applied Behavior Analysis and currently serves on the editorial board of Behavioral Interventions. She is also a member of the Autism Advisory Group for the Cambridge Center for Behavioral Studies. She has authored research articles and book chapters related to autism and is a regular presenter at national and international conferences.

Howard Goldstein, Ph.D., will address conference participants on Saturday morning with a talk on evidence-based practice in speech and language pathology in autism spectrum disorder (ASD). He is the Donald M. Baer Professor and Chair of Communication Disorders at Florida State University. Dr. Goldstein's area of expertise involves the development and evaluation of early intervention programs for children with communication disorders. Most recently, he has focused on evaluations of intervention programs for improving the language and literacy outcomes for young children with communication impairments, as well as the preparation of personnel who will work at the interface of research and policy.

Session Topics

The research track will feature Judy Reaven, Ph.D., discussing anxiety intervention in individuals with autism spectrum disorders, based in part on her OAR-funded research, and Glen Dunlap, Ph.D., BCBA, talking about behavior supports. Session presenters in the research-to-practice track will include Dennis Debbaudt talking about autism, safety, and the criminal justice system and Michael Carley, M.F.A., discussing the Global and Regional Asperger Syndrome Partnership (GRASP) at work. The Speech and Language track features Marelle Koenig, M.S., CCC, talking about why the unique profiles of children with ASD challenge the traditional assessment practices of speech-language pathologists. In Academic Instruction, Alison Moors will give a presentation on building fluent foundation skills for children with autism and Michael Fabrizio, M.A., BCBA, and Kent Johnson, Ph.D., BCBA, will discuss the relationship between language foundation skills and reading comprehension success for learners with ASD.

See the full schedule of speakers and register on OAR’s Web site at www.researchautism.org/news/conference/registration/index.asp. Before October 22, the conference fee is $50 for one day and $90 for both. After October 22, the registration website will close and registrations will only be accepted by mail or in person on the day of the conference.  After October 22, fees will increase to $75 for one day and $125 for both. Fees are waived for persons with autism and RUN FOR AUTISM participants. Scholarships are available on a case-by-case basis. Please contact OAR for more information at 703-243-9710 or conference@researchautism.org.

Top

Two Parents Share Their Perspective on School tRansitions

by Nancy and Bill Donlon

Our son, Alex, is a happy 12-year-old boy who is beginning his fifth year of transitioning into our school district. Helping their children with autism make the transition to a neurotypical world is exactly what most parents have been trying to do since they got the diagnosis of autism.

For us, it began with trying to understand what had happened to our typically developing 18-month-old. As his language deteriorated from two-word sentences to grunts and screams, we began speech sessions with him at 20 months of age. When he was two, we found out that he had autism. When he was three, he began to regain a limited and very stuttered speech. Between the time he was 18 months until he turned three, we pursued all the diagnostic tests and evaluations. That is also when we realized that our education and skills as a New York City police officer and a clinical nurse respectively had not prepared us for what we would need to do to obtain services for our child. Both of us were working full-time so that we could purchase our first home on Long Island, and we were awaiting the birth of our second child.

From an educational standpoint, we had always believed that a structured child-care center would provide an environment that was stimulating for learning. Alex started at the Tutor Time Center when he was two but before he was diagnosed. He stayed at the center until he was five. The staff was helpful as we set up some basic communication signs and prompts. We also spent time teaching Alex the social rules of the setting (e. g., no trashing of the bookcases). Alex learned to model his peers regarding group activities such as lining up against the yellow wall before playground time. He also learned to eat what was on the lunch menu. Thinking back, we guess we were pretty bold in sending a child with such a disability to a setting with 20 children and five teachers, but even in that environment our child learned. Although his rate of speech acquisition clearly did not improve until he began to receive one-on-one and then center-based training, he began to understand that he could model his peers and follow rules of behavior.

As parents, we went to a lot of training to understand how we could teach our child. Before long, we were attending applied behavior analysis (ABA) conferences on a regular basis. As a nurse, Nancy was amazed at how many parents attended conferences that were meant for professionals. That was when we realized how the autism crisis would be addressed: by the joining of parents and professionals in the passion for a cure.

Beginning with ABA

On Alex’s fourth birthday, our family hit the lottery. That is, our son entered one of the only ABA-based programs for children with autism on Long Island. Established in 1993, the Martin C. Barell School (which was named for the Board of Regents Chancellor who advocated for the program) was started, as most schools of this kind usually are, by a group of parents who fundraised and lobbied to open the doors for their eight children. The school is part of Nassau Suffolk Services for Autism, an agency that currently serves many families throughout Long Island by providing education, job-training, consultation, adult services, and respite. The school, a year-round highly structured program, has a teacher-to-student ratio of 1 to 1.5.

When we first placed Alex in Barell, which was not part of the school district, it was difficult to explain to others, including educators and school superintendents, why such an educational program was necessary for our child. Until, that is, Alex began to speak short sentences. He was being taught the prerequisites to learning, including the ability to attend and to model. His teachers reinforced those behaviors, first with edibles, then toys, and then tokens. (Now, whenever he seeks reinforcement, he usually receives a “thumbs up” and a smile.)  During his full-time placement at Barell, Alex learned to follow directions, match, and read (first by sight and then phonetically) as well as how to tie his shoes, ride a bike, rollerblade, and use a public restroom. These life and social skills could never be taught at a district program.

An intense program like the one at Barell is not without its downside. Alex needed more typical interactions with other children in the community. When he was six, his home programmer at Barell told us that it was time for Alex to join a sport. Was there a soccer team he could join? We were really nervous because we thought he needed to be “fixed” before he could venture out in the community like that. We took what we now refer to as our “leap of faith” and brought autism to this Long Island community. We did not do this alone. Alex’s teacher shadowed him at every practice and developed a behavior plan to keep him on task at the games. The coach was compassionate and interested to learn, and the parents were outstanding. Not once did we ever hear a negative word about why Alex was playing on the team. Instead, they cheered him on; every time he kicked the ball, they yelled his name. Four years later, when he scored his only goal on a penalty kick, parents on both sides cheered him on, and he was proud. That moment will stay with us forever. Although he ended his soccer career when intramurals ended, it was that experience that encouraged us to try baseball, basketball, tae kwon do, and swimming. The community response was consistently one of support. Because of these supportive experiences, we have become so comfortable with his diagnosis that we now assume that people will accept him.

Making the Transition

When a child has this level of disability, teaching and learning needs to take place every hour of every day. It is easy to focus on a challenging goal such as pronoun usage for a prolonged time. How do you decide what to teach next? The academic curriculum is useful for making those decisions, and it provides an academic standard against which we can measure our son’s strengths and weaknesses. Several years ago, he independently took his first vocabulary test in district. He got a 40 percent; we were thrilled. Our son was now capable of participating in the academic as well as life skills curricula.

Barell’s individualized education program (IEP) has also been useful. Each child at Barell follows an IEP and progresses independently with goals set out in the plan. For the past three years, Alex has attended Barell on Mondays and Fridays each week. On Mondays, his teacher can preteach some of the information that will be taught that week in district and work more selectively on language and life skills with him. On Tuesdays, Wednesdays, and Thursdays, Alex’s teacher from Barell shadows Alex as he attends full-day special education classes, which are taught at a 3, 4, 5 grade level, in district. Although Alex’s strength appears to be math, he is also beginning to show improvement in all those subjects that require language arts. During those days that he is in district, the goals are social as well as academic. This real-life setting provides a means to determine how a child would do in a mainstream classroom setting. It also is easier to practice such social rules as not cutting a line to be first. (We remember the days when Alex could not care less where his place was in line. Now he wants to be first and always be the winner. Transitioning into the community through school and sports taught him that as well. Funny, huh? ). On Fridays, he has a chance to review the week’s work and focus on those issues that are more challenging with his teachers at Barell.

We have been pleased with our son’s progress and look forward to furthering his transition to four and then five full days with his shadowing teacher fading as appropriate. Our son continuously amazes us by his capacity to learn and rise to the level of the bar. He has taught us to never sell our expectations for him short and to continue to advocate for a life that is filled with experiences where he can learn and grow to be a contributing member of his community.

Top

OAR Welcomes a New Staff Member and Newsletter Editor

Anne Danberg

OAR is delighted to welcome Anne Danberg to its staff as our Research and Programs Associate. Her main responsibilities will be to coordinate the upcoming conference (see the related article on page 1), helping conference attendees, speakers, Scientific Council members, and volunteers as well as working with the hotel. She’ll also be the primary OAR staff coordinator for the research competitions, the Autism Research Convocations, and the Life Journey through Autism series of resource guides.

Originally from Omaha, Nebraska, Anne graduated from the University of Pennsylvania this past May with a degree in English. She is excited about her first post-college job with OAR. “I'm looking forward to learning and growing with OAR. I’m glad to be helping the autism community. ”

Washington, DC-based freelance writer and editor Sherri Alms also recently joined OAR as its newsletter editor. With almost 20 years of communications experience, Sherri is happy she can bring her freelance expertise to help OAR spread the word about the work it does.

Top

OAR Announces 2006 Graduate Research Competition grant Awardees

In 2004, OAR’s Board of Directors established an annual research competition designed to support students who are actively engaged in research as part of their master’s or doctoral degree program. This year’s Graduate Research Competition was the most far reaching yet with 19 applicants from 16 universities and across 15 states. Each graduate research proposal is reviewed by a minimum of two reviewers, at least one of whom is a member of the OAR Scientific Council. Reviewers are chosen for their academic credentials and competencies as well as their knowledge of, and experience with, the provision of evidence-based services to learners with autism.

Scientific Council member Mary Jane Weiss, Ph.D., BCBA, from Rutgers University and the Douglass Developmental Disabilities Center and Jane Barbin, Ph.D., BCBA, president of the consulting firm Behavioral Directions, co-chaired this year’s graduate review process. Following this initial review, proposals for which there was positive agreement between reviewers became eligible for funding while proposals for which there was negative agreement were ruled ineligible. Proposals for which there was disagreement between the reviewers were submitted to Dr. Barbin and Dr. Weiss for their final review and recommendations. As a result of this process, 13 proposals totaling $22,000 were recommended for funding.

OAR is pleased to announce the 2006 OAR Graduate Research Competition award winners: 

Graduate Research Grant Awardees for 2006

OAR congratulates all of our 2006 Graduate Research Competition award winners.

OAR also wishes to express our sincere appreciation to the members of the 2006 Graduate Research Competition Review Committee, including Dr. Mary Jane Weiss (Co-chair), Dr. Jane Barbin, (Co-chair), Brenda Smith Myles, Ph.D. (Ohio Center for Autism and Low Incidence), Joanne Gerenser, Ph.D. (Eden II), Helen Bloomer, M.S., BCBA (Crossroads Center for Children), Suzanne Letso, M.A., BCBA (Connecticut Center for Child Development), James Mulick, Ph.D., BCBA (Ohio State University), Glen Dunlap, Ph.D., BCBA (University of South Florida), Ann Wagner, Ph.D. (National Institute of Mental Health) and Michael Alessandri, Ph.D. (University of Miami).

The people whose names are bolded are members of OAR’s Scientific Council.

Top

Research Update: Research on Transitions

by Peter Gerhardt, Ed.D.

Peter Gerhardt, Ed.D.

When the term “transition” is used with reference to learners with special needs, the default interpretation is usually “transition to work” or “transition to adulthood.” For learners with autism spectrum disorders (ASD), the eventual transitions to work and to adulthood are just two of the many transitions they will be presented with over the course of their lives, both before and after graduation. Whether transitioning to a new pair of sneakers, a more inclusive educational environment, or a different and more complex social system, many learners with ASD experience challenges in making successful stress-free transitions. This month’s research review focuses on the topic of transition in at least three of its possible forms.

ARTICLE ONE: Beck, M.H., Cataldo, M., Slifer, K.J., Pulbrook, V., and Guhman, J.A. (2005). Teaching children with attention deficit hyperactivity disorder (ADHD) and autistic disorder (AD) how to swallow pills. Clinical Pediatrics, 44, 515-526.

Summary: Medication is often used with individuals with autism to address both physical maladies (e.g., infections) and, perhaps more often, behavior challenges or excesses (e.g., aggression or self injury). For whatever reason medication is prescribed, however, it will be of little value if the individual in question is reluctant or, worse, refuses to swallow pills. While some may not have the prerequisite oral motor skills for swallowing pills, others may be reluctant due to the taste or texture of the medication and/or previous negative experiences (gagging, for example). The purpose of the current study was to examine the variations in a behavioral protocol designed to teach typically developing children with ADHD and children with autism how to swallow pills. Eight children participated in the study; four of whom, the clinical sample, had ADHD (ages 4-9 years) and four, the research sample, had autism (ages 4-6). Training materials included cake decorations, capsules of gradually increasing size (placebos), and a variety of preferred reinforcers.

Swallowing of the placebo contingent on a verbal prompt as well as indicators of distress were assessed. Specifically, “the child was verbally prompted to open his mouth wide and stick out his tongue. The therapist then placed the mock pill on the back of the tongue, immediately offered a preferred drink, and verbally prompted him to drink or swallow.” (p. 518). All non-dangerous behaviors were ignored during the session.

ARTICLE TWO: Harrower, J.K., and Dunlap, G., (2001). Including children with autism in general education classrooms. Behavior Modification, 25, 762-784.

Summary: The transition from a more specialized educational setting to a more inclusive setting in the general education classroom can be both difficult and, as noted by Harrower and Dunlap, “a fiercely controversial topic.” (p. 762). Further, transitions within the new environment from lesson to lesson, from teacher to teacher, and from classroom to classroom may present the individual with additional challenges not faced by his typical peers. Research on effective inclusion is difficult to conduct due to a number of factors, including the complexity of the topic as a focus of investigation, a lack of consensus beyond physical inclusion as to the definition of inclusion, and the diversity of expression that constitutes the autism spectrum (not to mention the potential impact of cultural, socio-economic status [SES], or school-based variables.)

Although not a research article, the authors offer a comprehensive review of data-based strategies for promoting the educational inclusion of learners with ASD and is, therefore, worthy of discussion here. The authors note that some researchers have documented such benefits of inclusion as high levels of engagement and social support, larger social networks, and more advanced individualized education programs (IEPs), while others voice the concern that “mere placement or proximity to typical peers [ ] may be beneficial, but it is insufficient in achieving an appropriate education.” (p. 764). The focus, therefore, of research on inclusion should be on the supports, instructional processes, and products of an inclusive education rather than on the physical presence of a learner with ASD in the general classroom.

Data-based “support and process” strategies reviewed by the authors include priming or pre-practice, prompting, picture schedules, the provision of corrective feedback, self-management, peer tutoring, peer (social) supports, cooperative learning, pre-task sequencing or interspersed requests, naturalistic instruction, and pivotal response training. Research, the authors note, has provided us with a number of effective tools for the promotion of effective, educationally relevant inclusion for many learners on the spectrum. Still, many questions about this highly complex and often emotionally laden topic remain unanswered. The need for additional research is critical.

ARTICLE THREE: Grey, I.A., Honan, R., McClean, B., Daly, M. (2005). Evaluating the effectiveness of teacher training in applied behaviour analysis. Journal of Intellectual Disabilities, 9, 209-227.

Summary: It is not just learners with ASD who experience multiple transitions in their lives but also the teachers whose job it is to provide an appropriate, effective, and individualized education. As such, the intent of this study was to evaluate the effectiveness of a course in applied behavior analysis (ABA) provided to teachers working with learners with ASD. As the authors note, “Despite the demonstrated effectiveness of ABA, there are difficulties with its use in typical school settings. Factors such as availability of skilled practitioners, intensity of treatment, staffing requirements, specialist supervision, and acceptance as an educational intervention” (p. 210) may impact the transition of ABA from theory to practice and from practice to practical, consistent implementation.

For this study, 11 female special education teachers (with a general education degree and experience working with children with ASD) in Ireland completed a 90-hour course on the principles and application of ABA. Following completion of their course work, teachers were asked to develop functionally relevant, individual support plans for their students with ASD (ages 2 years, 10 months to 15 years) intended to either decrease a previously identified challenging behavior or increase levels of appropriate responding. The results indicated that these support plans were successful and resulted in an average change of 80 percent in the expected direction across target behaviors.

In general, teachers felt that the quality of the course was greater than they had expected, and they had acquired a variety of new beneficial skills. Lastly, parents of the children observed a marked positive change in their child’s behavior following the teacher’s completion of the course. As no follow-up was conducted, the extent to which these new skills were maintained over time is unknown. Still, one might hope that the positive behavior change in their students associated with the newly acquired skills might be sufficiently reinforcing to maintain these new skills within their instructional repertoire. Further research on this very important topic is certainly indicated.

Top

RUN FOR AUTISM Readies for Its Big Day

On October 22, some 40,000 people will compete in The LaSalle Bank Chicago Marathon®, and OAR will be out in force with a large team of runners. Just one week later on October 29, another 34,000 runners will be running through the streets of Washington, DC, in the 31st Annual Marine Corps Marathon™. OAR will once again be front and center with a team of dedicated athletes supporting the autism cause. A handful of runners will also represent OAR in races across the country this fall as part of OAR’s RUN FOR AUTISM-AMERICA program.

What gives these runners the discipline and dedication to keep training day after day? What motivates them to finish mile after mile on race day? For some, it’s the thrill of a physical challenge but for many who RUN FOR AUTISM, there’s much more to the story.

Jane Boulden will be running in the New York City Marathon in November.  Since 2003, she says, she’s been running a marathon annually “for a cause very important to my family. I do this for my son, Cary Dillon, who has a form of autism with mental retardation. Everything is a challenge to Cary but he melts your heart with his kisses and smiles.”

Natalie Pena is also running for a family member, her brother Aiden who was born two days before her 18th birthday. “Witnessing the growth and birth of Aiden,” says Pena, “was the most profound experience of my life.” Aiden was diagnosed a few months after his first birthday and has “progressed beautifully since then.” But, explains Pena, “living with autism is a lifelong process. Aiden has a challenging life ahead of him, but with an organization like OAR and determined individuals like you and I, he is not going to face them alone!”

Team members like Boulden and Pena are just two of many runners who are not only giving up a large part of their lives to train but also to raise money for OAR. Just as each runner needs to put in the miles, each also needs to contact as many people as possible to let them know what they are doing and why they have taken on this goal. The RUN FOR AUTISM Team has already raised $151,000, but it is shooting to reach a much higher total by the end of October. Down to its final days of preparation, the team can use more support, and OAR is hoping people like you will provide it. Whether you make a donation, volunteer, or partner with a runner, you can provide vital support to OAR’s RUN FOR AUTISM-AMERICA. (See the box on this page for more information on how you can help.)

Running for OAR in Chicago

The LaSalle Bank Chicago Marathon® starts in Grant Park and runs along beautiful Lake Shore Drive, as well as an area to the west of the city. Over the years, it has come to be known as one of the most prestigious marathons in the world and has been the scene of a

number of world-record performances. The RUN FOR AUTISM-Chicago Team is breaking records of its own with 123 runners competing to meet their own personal race goals as well as raise a considerable amount of money. One of those runners, Tricia Nagel, will join her husband who has run the Chicago Marathon twice. “I finally decided it was time to buy a pair of running shoes and try jogging those 26.2 miles myself. With the help of my supportive husband, Derek, and my daughter and other training buddy, Sarah, my blisters and sore muscles will be for a worthy cause.”

Nagel explains that what motivates her to get up at 5 a.m. to go jog and to run in high humidity, sweltering heat, and pouring rain is the realization that the day-to-day struggles she faces are nothing compared to what individuals with autism endure over a lifetime. That, she says, is why she is dedicating this marathon to OAR. When Nagel began teaching French in elementary schools nine years ago, she had little knowledge and exposure to children with autism. “I entered my first classroom greeting everyone with a friendly ‘Bonjour!’ Most of the students replied, ‘Bonjour, Madame,’ except for one. He was autistic and speaking was his greatest challenge. Over several months of practice and repetition, he eventually learned to greet someone and ask how they were doing in French.Watching this special boy overcome something that came so naturally for the other students inspired me to overcome some of my own personal challenges.”

And in Washington DC

The Marine Corps Marathon™ is called the “People’s Marathon” and the RUN FOR AUTISM - Washington DC team is assembled and also breaking records. For the first time since the inception of the charity program, the team totals over 200 runners and more are joining to take advantage of the new Marine Corps Marathon 10K Race held the same day as the Marathon. The 10K Race will use the same start and finish line as the Marathon, but will bypass the 20 “hard” miles in between. Husband and wife team Mary Jo and Rodney Hsing were preparing to run the Marine Corps Marathon, the fifth marathon for Rodney and fourth for Mary Jo when Rodney injured his Achilles tendon. He will, he says, be cheering Mary Jo on as she runs her first marathon on behalf of OAR. Their efforts extend beyond the 26.2 miles of the marathon to record fundraising as well. So far, the couple has raised almost $4,000. Their inspiration is their daughter Katelyn who lives with an autism spectrum disorder. Donations, say the Hsings, “assist in continuing and accelerating research/treatment for our daughter Katelyn and all the children diagnosed on the spectrum.”

January Marathons

Once the October events have concluded, the RUN FOR AUTISM Team will turn its attention to the Chevron Houston Marathon on January 14, 2007, and the recently added ING Miami Marathon on January 28. If you are looking for a great trip, an opportunity to get fit after the holidays, and a chance to run in warmer weather this winter, considering running either of these events for autism.

As you can see, October will be a very busy month with most of the RUN FOR AUTISM Team competing in the primary goal of the year. If you are not running and unable to volunteer, OAR hopes that you can assist one of our runners in some way.

Top

Runner's profile: Paul Kosmarciuk Brings Dedication to Running and fundraising

Paul Kosmarciuk, 18, is new both to the world of running and to autism but that hasn’t stopped him from pouring his energy and ambition into doing his first marathon as a fundraiser for OAR. A high school senior at Stevenson High School in Lincolnshire, Illinois, about an hour northeast of Chicago, Kosmarciuk started running in May when he began training for the The LaSalle Bank Chicago Marathon, which will be held on October 22. “I got interested in running a marathon because I wanted a focus for the summer,” Kosmarciuk explains. “A friend suggested training for a marathon, and I went to a Web site to find out more about what would be involved. I wasn’t sure if I could do it, but I try to challenge myself all the time and a marathon sounded like a good challenge. It’s turned out to be the biggest challenge of my life so far.”

Kosmaricuk has faced other challenges. Originally from Lithuania, he moved to the United States from Russia four years ago, where he and his mother had lived for 11 years. “We came here in late April 2002. The first year was really hard, because I had to learn the language and make all new friends. I persevered though and that set my pattern for meeting challenges and making new goals that would challenge me.” Kosmarciuk says that his mother moved them to the United States to give him more opportunities and the chance to create a better future for himself.

He became even more invested in meeting his goal of running a marathon when he found out he could raise money for a charity. “That shifted my whole focus from running to getting the word out about autism,” he says. The high school senior didn’t know anything about autism and his ignorance ignited his curiosity. “I had heard the word but didn’t know anything about it. Other conditions and diseases, like Alzheimer’s and cancer, are so well-known.” He began to research autism and e-mailed OAR as well as a couple of other organizations. “OAR suggested I go visit Northshore Pediatric Therapy [in Glenview, Illinois], and I spent a whole day at this care center. I shadowed one of the specialists who was taking care of the kids. I thought it would be great to be able to do something about autism.”

Paul Kosmarciuk

Kosmarciuk’s interest in medicine began before his interest in running. “I’ve wanted to become a doctor ever since I was a little kid and that hasn’t changed. Dealing with people’s lives is something I would love to do. I volunteer at a hospital in the emergency room, and that’s given me a lot of exposure and the chance to learn a lot about different things.”

So far, Kosmarciuk has raised almost $500 for OAR in pursuit of his $1,000 fundraising goal. “I’m really glad to be involved. It’s a great feeling to know you can change the lives of those affected by autism and their families.” Kosmarciuk started his fundraising efforts by “writing letters to everyone I knew,” he says, “and they were really open.” Their enthusiasm fired his enthusiasm even more, and he expanded his efforts to include a Web site page as well as printing business cards that have the address of the Web site on them. “I’m getting the word out about it to everyone I know, and I hope they’ll feel the same compassion I do.”

He’s also remained dedicated to his marathon training, doing long runs with groups from the Chicago Area Runners Association (CARA) every Saturday. “People who have done marathons before give me tips. I also run with a pacing group that helps me work on pacing and form.” Following a program provided by CARA, Kosmarciuk runs four or five days during the week and does regular gym workouts as well. In mid-September, he completed his first 20-mile run, his longest so far. He says that running is a great stress reliever. “When I first started running, I thought running was all physical, but marathons are different because a lot of it is mental.”

Kosmarciuk says he used a mental focus to complete his first half-marathon in August at the Chicago Distant Classic. “I wanted to stop and rest, but I just kept going because I knew I was running for people with autism. I kept their pictures in my mind and made it to the finish line.”

Take a look at Paul Kosmarciuk’s Web site at http://www.firstgiving.com/pages/default.asp?id=cgg/109827

Top

FEAT of Washington Expands to Meet Many Needs

Families for Effective Autism Treatment (FEAT) of Washington began in 1996, Executive Director Brenne Schario says with a laugh, as a “coffee klatsch,” albeit one with a serious purpose. Its five founding families gathered to put together applied behavior analysis (ABA) programs for their children and to spread the word about ABA.

Ten years later, the organization serves more than 500 families in Washington state and includes a staff of administrators, program experts, and autism-related professionals, including a newly hired clinical services director. Its work has expanded as well to include helping newly diagnosed families connect with local providers, sponsoring ABA workshops, providing resources for its member families, and offering educational and recreational programs for children with autism.

Schario explains that at the heart of FEAT of Washington’s mission is a desire to ensure that children and young adults reach their potential. “We expanded our mission since we began to include young adults, which necessitated changing our name from Families for Early Autism Treatment to Families for Effective Autism Treatment,” Schario explains. She says that, as the founding families saw their children grow up, the focus of the organization also grew to helping adolescents and those who live with autism as well as the newly diagnosed.

Member Services

She points to FEAT of Washington’s mentoring program as a great resource for families with children who have recently been diagnosed with autism. “We pair new families with mentoring FEAT members to provide a mini-support system.” She says that the organization tries to pair up families who live in the same school district so they are familiar with what the new families are dealing with. A resource guide is another tool that both new and veteran families find useful. The guide provides descriptive listings of professionals who deal with autism in some way, from board-certified behavioral analysts to hairstylists, as well as resources, such as recreation and respite agencies, Web sites for alternative interventions, and summer programs. FEAT members recommend professionals and organizations for inclusion in the guide.

Education and Recreation

The organization has also developed education and recreational programs for children and adolescents with autism. The Academic Summer Program for pre-kindergarten to sixth-grade students, provides an intensive five-week program to help accelerate academic progress, using the principles of ABA. Junior and Community Super Saturdays help children with autism and their siblings and peers, from the ages of 3 to 14, productively interact, providing both recreation and socialization.

Two year-round programs focus on education, says Schario. The year-round Rising Star Academy provides early childhood education for 3- to 6-year-olds. The newest program, Transitions for Teens, for young people age 13 and older, was designed by OAR President Dr. Peter Gerhardt. It is described on FEAT of Washington’s Web site as “a constellation of services targeted at the needs of low skilled, moderately skilled, and highly skilled adolescents with autism and related disabilities.”

Sharing What Works

Schario has been the organization’s executive director since 2001 and came into the organization as a parent and volunteer soon after it was created. She believes that FEAT of Washington has been able to expand and innovate because it relies on a “symbiosis between parents and professionals in this community. Collaboration and symbiosis are the reasons for our success. We wouldn’t have been successful in our expansion if we didn’t have professionals who are passionate about what they do and dedicated to children.” Schario believes that neither a parent organization nor a professional organization can be as successful alone as when they collaborate.

She also believes that parents trust FEAT of Washington because the organization lives out its belief that children with autism can learn. “If a learner cannot learn a skill, then the teacher must not be using the right teaching method. It’s incumbent on a teacher to figure out the student’s learning style and get through. We believe everybody can learn.”

Read more about FEAT of Washington on its Web site at www.featwa.org.

Top

2006 Combined Federal Campaign Kicks Off

In addition to school and football season, September brings the kick-off of the Combined Federal Campaign (CFC), the annual at-work charitable fund drive for federal government employees, members of the military service, and postal workers. It is the largest employer-sponsored fund drive in the world, soliciting approximately 4 million employees and raising more than $235 million annually. OAR has again qualified for the CFC and will participate as a member of the Health and Medical Research Charities of America federation.

As a participating charity since 2003, OAR has received almost $500,000 in pledges. The funds received, combined with those generated by the RUN FOR AUTISM, have spurred the growth of OAR’s research and information programs. As a result, with the grants OAR will make this year, OAR’s total research funding will surpass $1,000,000 in less than five years.

To qualify for the CFC, a charity must apply and meet a series of standards each year. Principal among these is to have a ratio of expenses to revenues of less than 25 percent and to be eligible nationally to demonstrate viable program services in at least 15 states in the past three years. OAR met the 15-state requirement three years ago, and in its most recent application, demonstrated services in 30 states and the District of Columbia, as well as in Canada and Ireland. OAR has a qualifying financial ratio of 15.3 percent for this year’s CFC campaign.

On a related note, OAR also received the Independent Charities Seal of Excellence, which is awarded to the members of Independent Charities of America and Local Independent Charities of America that have, upon rigorous independent review, been able to certify, document, and demonstrate on an annual basis that they meet the highest standards of public accountability, program effectiveness, and cost effectiveness. These standards include those required by the U.S. government for inclusion in the CFC. According to the Independent Charities of America, of the 1,000,000 charities operating in the United States today, it is estimated that fewer than 50,000, or 5 percent, meet or exceed these standards, and, of those, fewer than 2,000 have been awarded this seal.

For more information on the CFC and OAR’s participation, please visit OAR’s Web site, http://www.researchautism.org/support/cfc/index.asp. To those members of the military service and federal employees who have contributed to OAR and autism research through the CFC, OAR says, “Thanks for your contribution and your service.”

Top