The OARacle
	The Monthly E-Newsletter of the Organization for Autism Research "Research and Resources That Help Families Today!" www.researchautism.org

February 2005

Jim Sack

Monthly Message: 2005 Goals
by OAR President Jim Sack

Three years ago when we started OAR, we had no way of envisioning what we would accomplish in that short span of time or where we would be today. On most counts, OAR has surpassed our best expectations each year. We owe that success to many factors: donations from inside and outside the community, support from other autism groups, a dedicated staff, a fully engaged Scientific Council and strong Board leadership. The key to OAR’s success to date is planning and goal setting. Each year we compare our performance to the goals we set, evaluate our total performance, then take aim on goals for the coming year. Having satisfied our 2004 goals, we are working toward even more challenging objectives this year.

Last year, we set goals in three areas: research, information and education and accomplished the following:

• Continued to publish a monthly e-newsletter, The OARacle, and introduced a quarterly issue focused on current applied research;
• Funded five new pilot studies ($150,000 in total grants) through the annual Applied Research Completion;
• Introduced the Graduate Research Grants Program and awarded six grants ($11,000 in total grants) to six students conducting autism research in pursuit of an advanced degree in a field related to autism;
• Reprinted “Life Journey through Autism: A Parent’s Guide to Research” and distributed 1,000 more copies;
• Published “Life Journey through Autism: An Educator’s Guide,” the second in OAR’s series of community-friendly guides; and
• Hosted the second annual Applied Autism Research and Intervention Conference.

As we close the book on 2004, we begin 2005 in a phase of transition, seeking to build the OAR Team to carry us to an annual operating level between $1 and $2 million. To that end, we are actively seeking to expand our Board of Directors and volunteer base nationally to keep pace with our program reach and the success of our RUN FOR AUTISM program. At the same time, we have set new goals in each of our three mission areas:

Research

• Fund up to eight new studies ($240,000) through the Applied Research Competition and expand the program to consider both one- and two-year studies
• Fund up to ten research studies ($15,000) conducted by graduate students through the Graduate Research Grants Program
• Investigate research partnerships with other autism organizations

• Distribute the “Educator’s Guide to Autism”
• Create an “Educator’s Guide to Asperger Syndrome” and a “Parent’s Guide on Transition to Adulthood,” the third and fourth publications in OAR’s series of community-friendly resource guides
• Continue to publish The OARacle

• Organize and host the third annual Applied Autism Research and Intervention Conference on the theme “Education and Intervention Across the Life Span.”

While we are already well on our way to achieving many of these goals, accomplishing them is still going to require a great deal of OAR’s time and resources. Our fundraising goal to support these programs is $700,000, a 40 percent increase over 2004. To achieve that, OAR will need to continue the success of the RUN FOR AUTISM and find new sources of revenues as well.

In closing, 2005 promises to be a year that serves as a bridge from OAR’s early years to an even more successful future. As we work to accomplish the goals listed, we will be laying the groundwork for even more far-reaching programs to serve the autism community. Those programs will emerge in the course of the year. Thanks to each of you for your interest and support of OAR.

NEWS

CDC Launches National Awareness Campaign

On February 21, 2005, the Centers for Disease Control and Prevention (CDC) launched a national campaign to educate the public, healthcare professionals and childcare providers about the warning signs of autism and other developmental disabilities. Developed in collaboration with OAR, their other autism partners as well as the U.S. Department of Health and Human Services (HHS) and the American Academy of Pediatrics (AAP ), the CDC’s “Learn the Signs. Act Early” campaign first aims are to raise the level of understanding of developmental milestones across the board and highlight the importance of early screening and intervention.

Research shows that early intervention significantly improves a child’s developmental potential. The campaign’s mission is to educate parents and primary healthcaregivers about tracking children’s social and emotional milestones to spot the signs of developmental delays.

According to the CDC, an estimated 17 percent of children have a developmental or behavioral disability such as an ASD, mental retardation, or attention-deficit/hyperactivity disorder (ADHD). Two-percent of children have a serious developmental disability, such as mental retardation, cerebral palsy, or an ASD. Recent estimates by the CDC indicate that autism may occur in up to 1 in 166 births.

In addition to educating parents about important steps in a child’s development, the CDC campaign targets healthcare professionals, striving to make them as attuned to social and emotional milestones as they are to physical and growth marks. Specifically, it seeks to have these professionals more closely observe and measure when children achieve certain abilities. With the campaign, the CDC hopes to improve dialogue with parents and urge them not to hesitate to refer a child to screening when a delay in development is suspected.

In response to growing rates of autism and concerns about environmental causes for the disorder, the CDC has launched several monitoring and research efforts in the past two years. During the 2004 fiscal year, Congress appropriated $16 million to the CDC to support autism surveillance, research and awareness activities. The CDC’s efforts are coordinated by the National Center on Birth Defects and Developmental Disabilities (NCBDDD), which tracks the number of children with ASDs, sponsors research and supports other programs to monitor the prevalence of ASDs.

For this campaign, the CDC has partnered with the Autism Society of America (ASA), Cure Autism Now (CAN), First Signs, the National Alliance for Autism Research (NAAR) as well as OAR in developing the campaign strategy and its supporting materials. OAR is both an autism partner of the CDC and a member of the NCBDDD External Partners Group, a coalition of government and private sector participants who work together to enhance the mission and activities of the NCBDDD in promoting child development; preventing birth defects and developmental disorders/disabilities; and enhancing the quality of life and preventing secondary conditions among people who are living with mental or physical disabilities.

Parents can get information about local resources by calling 1-800-CDC-INFO. Free resources are available in English and Spanish for parents and healthcare professionals. For more information or to request materials call 1-800-CDC-INFO (1-800-232-4656) or visit the CDC “Learn the Signs. Act Early” Web page.

Yale Team Reports Progress in Social Skills Research

OAR-funded researchers at Yale conducting a pilot study on a social skills training method are making strides in the development of a practical tool for schools and communities, according to their recently submitted Interim Report.

Principal Investigator Lawrence Scahill, Ph.D., and his co-investigator Kathleen Koenig, MSN, are studying the effectiveness of a social skills development program on 60 children between the ages of 8 and 11-years old. The intervention aims to teach social initiation and appropriate social behavior through interaction between children with autism spectrum disorders and typical peers. The study, entitled “Social Skills Development in Children with Autism Spectrum Disorders,” is a one-year pilot study that, among other outcomes, is expected to produce a treatment manual for use by educators, clinicians and communities to implement the intervention and appropriately measure students’ progress. The study, which is being funded by generous donations from OAR Vice President Madeline Millman and her husband, Arthur, and their friends, Michael and Pepi Kahn, will finish later this year.

The project began with a 16-week intervention period in which the study participants, verbal children with ASD and known social difficulties, are divided into six play groups and matched with two to three typical peer tutors. The typical children, who sign up to be tutors for children with disabilities and are trained in this role, give the students with ASD feedback on their behavior. The investigators use questionnaires and interviews with parents as well as classroom observations to determine the treatment’s effectiveness.

Based on their progress through 10 months of this study, Scahill, an Associate Professor of child psychiatry and nursing at Yale University, and Koenig, an Associate Research Scientist at the Yale Child Study Center, were recently awarded funds from the Beatrice Renfield Yale School of Nursing Clinical Research Initiative Fund to add 20 children to its original sample of 40 and follow up on the children who have completed the program. The investigators expect to complete the 16-week intervention on all of their subjects by April 2005 and submit their preliminary findings in the late spring.

Currently, the researchers plan to submit a proposal to expand the research for 2005 focusing on an extension of the current program. Scahill and Koenig indicate that they may explore other issues related to the study such as the types of students for which the program seems to make the largest difference as well as the effectiveness of the treatment program on students with an IQ in the range of mental retardation and the best ways to measure change in subtle social behaviors in children with PDD as they progress through the program.

OAR Salutes the Autism Coalition and Autism Speaks In this month’s issue of The OARacle, we salute the Autism Coalition for Research and Education and Autism Speaks, two groups that raise funds and public awareness about autism. A bi-monthly feature, the Salute recognizes an individual or organization that has gone above and beyond for OAR and the autism community. In a community where the missions of several parent organizations overlap, the Autism Coalition for Research and Education and now, a new organization called Autism Speaks, are coordinating efforts to find answers for all families who struggle with autism. With a mission to work with existing organizations to find the cause, treatments, and cure for autism, the Autism Coalition has raised funds, distributed grants, and raised public awareness about autism since 1999. Together with its partner organizations, Cure Autism Now (CAN), Dan Marino Foundation, Doug Flutie Jr. Foundation for Autism, Inc., National Alliance for Autism Research (NAAR), OAR and Unlocking Autism, the Autism Coalition has strengthened our common missions through its concerted effort. Autism Speaks, a special fundraising drive of the Autism Coalition, has a similar mission to harness the power of the community to urge the government and private sector to pay attention to the rising number of autism cases. Created by Bob Wright, the vice chairman of GE and chairman and CEO of NBC Universal, and his wife Suzanne, who are grandparents of a child with autism, the group’s creation was announced on the NBC “Today” show last week during its weeklong coverage of autism and its effects on American families. Reports on autism during broadcasts of the “Today” show, “NBC Nightly News with Brian Williams,” CNBC, MSNBC, Newsweek magazine and on the MSNBC Web site brought an unprecedented amount of attention to autism, giving a voice to the many families affected by autism and researchers working to find the cause of and treatments for autism. Besides raising awareness, Autism Speaks plans to fund the creation of a network of academic centers and autism treatment programs to collaborate in the development of large-scale clinical trials for children with ASD. Already, members of the community are stepping up to help the cause. Bernie Marcus, co-founder of The Home Depot, Inc. and chairman of the board of The Marcus Foundation, has generously donated $25 million to fund the creation of Autism Speaks. OAR applauds the mission of the Autism Coalition and Autism Speaks and salutes them for their community leadership, dedication, and vision. “The Autism Coalition has been a willing partner and constant supporter of OAR’s since our first day," said Jim Sack, OAR’s President. “Autism Speaks takes the Coalition’s mission and vision to a higher level, which can mean only more positive things for the autism community.” To find out more about these two groups, visit the Autism Coalition and Autism Speaks Web sites.

MONTHLY RESEARCH ARTICLE

Social Skills Training for Students with ASD and Their Peers

by Jed Baker, Ph.D.

Jed Baker, Ph.D.

All social interaction and social problems involve at least two people. Social difficulty can be defined as both a skill deficit for the student with a social disability and a problem of acceptance of that student by peers or the community. Thus, intervention must focus on teaching skills for both the student with a disability and typical peers. All too often we strive to “fix” the child with the disability and virtually overlook the “typical” peers who may be ignoring, teasing or rejecting the student. Moreover, including typical peers as a focus for intervention may yield results much sooner, as typical peers may learn to be understanding of the student with a disability more quickly than the child with a disability can learn to interact more appropriately with peers. We might begin to target peers at the age that many students enter school environments and typically begin to interact with peers, by about age 3 to 4 years old.

Consistent with this view, I believe effective social skills training for individuals with autism spectrum disorders (ASD) and their peers consists of at least the following four components:

For students with ASD
1. Skills training lessons to teach explicitly the social skills that do not come naturally for ASD students.
2. Activities to promote generalization of skills in the situations where they are needed.

For typical peers and the student’s community

3. Sensitivity training lessons for others to be more accepting and engaging of students with ASD.
4. Activities to promote generalization of sensitivity to ASD students.

Although most of these components are relevant for all ages, the focus of this article is on students age 3 through adulthood who have developed some basic receptive language skills and show some joint attention skill, that is, the ability to, at least briefly, attend to another person or to attend to what another person is showing a student. Joint attention and language skills are important prerequisites for later learning, as you have to be able to attend to and understand others to learn from others. To address these crucial early prerequisite skills, the interested reader should look at popular Applied Behavioral Analysis (ABA) programs like discrete trial methodology (Lovaas, 2003) and verbal behavior training methods (Sundberg and Partington, 1998) or non-behavioral methods such as Greenspan’s Floortime methods (Greenspan and Weider, 1998). The methods described below are appropriate for students with some capacity for joint attention and some very basic receptive language ability.

1. Skill Lessons
   Skill lessons include a variety of strategies geared to the students’ cognitive/language functioning. For those students who can understand verbal instructions, we might break down a skill into its component steps, explain it, model it, and role-play it until he or she can demonstrate the skill and understands why it is important. Let’s say a student with good verbal skills always wants to do things his way and that conduct gets in the way of developing peer relations. We decide to teach him how and why to compromise. We teach him how to ask what others want, say what he wants, and to offer to do a little of both. We explain when you do a little of both (i.e., compromise) the other person will be happy and may want to play with you again or be your friend. Using this straight-forward approach, we have broken down into simple steps over 70 such social skills related to play, conversation, emotion management and empathy in a manual on social skills training for children with social-communication problems (Baker, 2003).
   
   For the student with less ability to understand verbal explanation, we have translated a subset of those skills into picture form (Social Skills Picture Book, Baker, 2002). Instead of explaining skill steps with words, we first show a picture sequence. Thus for a skill like “compromise,” the pictures demonstrate a student asking to play a game with another student who says he wants to play another game. We show them pictures of the students compromising and playing a little of both games with both looking happy. Then we show them pictures of the same people not compromising, not playing with each other with both looking upset. Of particular benefit is making your own picture books using pictures of your students, so that they see pictures of themselves engaged in the right (or wrong) way to demonstrate a skill. After the pictures are shown, students should still role-play the skill so that they can actually go through the motions of the skill steps.
   
   A strategy called cognitive picture rehearsal utilizes cartoon-like drawings on index cards combined with positive reinforcement principles (Groden & Lavasseur, 1995). Cognitive picture rehearsal always includes drawings or pictures of three components: the antecedents to a problem situation, the targeted desired behavior, and a positive reinforcer. The pictures are displayed on index cards. On the top of each card (or on the back of the card) is a script describing the desired sequence of events. Children are shown the sequence of cards until they can repeat what is happening in each picture. The sequence is reviewed just before the child enters the potentially problematic situation.
   
   For example, a cognitive picture rehearsal was created for Matt, a 7-year-old who would throw tantrums when his teacher told him to get off the computer. Cards 1 and 2 illustrated the antecedent to the problem situation: Matt is playing at the computer and then the teacher tells him it is time to get off the computer. Cards 3 and 4 showed Matt engaged in the desired target behavior: thinking that the teacher will be happy if he gets off the computer and give him a chance to use the computer later, he then says, “Okay, I’ll get off the computer.” Cards 5 and 6 show the positive rewards of engaging in the desired behavior: Matt receiving a point on a reward chart and the teacher letting Matt use the computer again later because he had cooperated earlier.
   
   Social Stories^TM, developed by Carol Gray and colleagues (Gray et al., 1993), uses stories written in the first person to increase students’ understanding of problematic situations. Beginning with the child’s understanding of a situation, a story is developed describing what is happening and why, and how people feel and think in the situation. While the story contains some directive statements (i.e., what to do in the situation), the focus is on understanding what is happening in the situation.
   
   The following situation provides an example of a situation in which Social Stories^TM may help an individual with autism deal with a social problem. Peter was a 13-year-old who frequently got into fights at lunchtime because he believed that other students in the cafeteria were teasing him. He said that several other boys who sat on the other side of the cafeteria always laughed at him. He would give them “the finger” and then they would start a fight with him. When Peter was observed at lunch, it was apparent that the other boys were laughing, but not at him. They were at least 50 feet from Peter, not looking at him, and laughing with each other, presumably about some joke or discussion they were having.
   
   We developed the following social story for Peter starting with his perspective that others might be laughing at him:
   
   “When I am in the cafeteria I often see other boys laughing and I think they are laughing at me. Lots of students laugh during lunchtime because they are talking about funny things they did during the day, or funny stories they heard or saw on TV, movies or books they read. Sometimes students laugh at other students to make fun of them. If they are making fun of other students, they usually use the student’s name, or look and point at that student. If the other students are laughing, but they do not look or point at me, then they are probably not laughing at me. Most students do not get mad when others are laughing, as long as they are not laughing at them. If they do laugh at me, I can go tell a teacher rather than give them the finger.”
   
   Like cognitive picture rehearsal, Social Stories^TM are read repeatedly to children until they have overlearned them, and are then read again just prior to the problematic situation.
   
   
2. Generalization
   Generalization refers to the ability of an individual to use a new skill in situations beyond the training session, and hopefully to use the new skill spontaneously without prompting from others. To achieve this level of fluidity with a new skill, individuals must practice and repeat the skill steps a great deal. As a result, it is unrealistic to think one can generalize many new skills at once. In my experience, true generalization occurs when individuals are reminded about or rehearse no more than one to three new skills every day for several months. Although individuals can learn the concept of many more skills during skill lessons, they may only be able to generalize one to three new skills at a given time. Generalization of a skill involves three steps: priming before the situation in which the skill is needed; frequent facilitated opportunities to practice the skill; and review of the skill after it is used.
   
   Priming involves some reminder to the individual of what the skill steps are “just prior” to needing the skill. For example, just before going on a job interview, an individual might go over how to answer anticipated questions. Or just prior to starting a frustrating task at school or at work, the individual might review options for dealing with frustrating work. Priming can be verbal and/or supplemented by a visual aide. Verbal priming involves someone verbally explaining the skill steps prior to the situation in which they will be needed. Cue cards, behavior charts, copies of skill lessons (Baker, 2003), Social Stories^TM, cognitive picture rehearsals, and social skill picture books can serve as visual aides that depict the skill steps.
   
   If students want to change their behavior but can’t remember the skill steps, then cue cards or copies of the skill lessons may be ideal. We might write one to three skills on an index card and laminate it. Then we might ask a parent, teacher, or employer or the student him or herself to review the skill steps prior to the situation in which it will be needed. Although it is ideal for the student to see the skill steps immediately prior to the situation in which they need to use the skill, this may not always be practical. Instead the parent, teacher, employer, or student might review the skill once in the morning prior to school or work, once at lunch and then again at the end of the day so that the student at least has to think about the skill three times per day.
   
   If a student has not fully agreed to try a new skill and thus is lacking in “intrinsic” motivation to perform the skill, then the behavior chart can be used as a reward chart in which external rewards are contingent on demonstrating certain targeted skills.
   
   In order to practice the new skills, students need opportunities. Facilitated opportunities involve creating daily situations in which the skills can be practiced and coached. Sometimes those opportunities are naturally built into the day. For example, a student learning to deal with frustrating work may always have his or her share of challenging work to do during the day. Other times, the practice opportunities need to be carefully planned or created. For example, a student who never initiates conversation with anyone may be asked to call someone on the phone once per day or join others for lunch and initiate conversation once during that period.
   
   After situations have occurred in which skills were needed, the student’s performance can be reviewed to increase awareness of the skill. If a student’s progress is tracked through a reward chart, the reason why the student received the reward (or not) should be reviewed with him or her to enhance learning.
   
   
3. Peer Sensitivity
   Sometimes students with ASD are ignored, yet often they are actively teased or bullied. Students with ASD may do nothing to deserve such teasing and other times they may provoke such reactions with unintentionally “irritating” behaviors like perseverating on a topic, making loud noises, or having angry meltdowns. When students are harassed, teased or rejected because they look or behave differently, it is crucial to explain to others the unintentional nature of their behaviors and how others can help. We often talk with peers not only about the unintentional nature of their difficult behaviors, but the strengths and talents of the individuals with ASD as well as presenting examples of successful, famous figures who may also have had an ASD.
   
   
4. Generalization of Peer Kindness
   We ask peers to do three things to help their ASD peers and each other: (1) include others who are left out; (2) stand up for those who are teased; and (3) offer help to those who are upset. To help these kind behaviors generalize into the daily routines of the students, we might create a lunch buddy program, where peers volunteer to eat and hang out with the ASD student on a fixed rotating schedule. We might also introduce a reward program to recognize and reward “kind” behaviors towards fellow students. We may also train peers in how to engage ASD students in play, including how to get their attention and what kinds of games to initiate (i.e., games the ASD student can play).

Motivational Problems
The explanation of skills training so far may seem pretty straightforward if not for the fact that we are teaching actual people with their own agendas, desires and wishes that may not correspond with the well-meaning wishes of their parents or social skill therapists. For example, take the student described earlier who may be quite verbal and always wants to do things his way. We decide to teach him how and why to compromise. We explain how compromise helps others to be happy so they may want to play with you again or be your friend. And then he turns around and says, “I do not want any friends, and I do not want to play with anyone, I don’t want to compromise. I just want to do what I want to do.”

Clearly, one of the major challenges of skills training is motivation to socialize. For many ASD students, socializing has never been that pleasurable and so they retreat into their world of objects, facts and routines that provide more stability and comfort.

For students with good verbal reasoning skills, generating motivation is about building a rationale for the importance of social skills training. Motivation may come from an individual’s insight into his or her own pattern of strengths and weaknesses. Many students with special needs deny or otherwise resist any mention of weakness or difficulty. It takes a modicum of self-esteem to tolerate thinking about one’s difficulties. One way around such resistance is through counseling that allows them to explore and experience their talents and strengths. Targeting weaker areas that need improvement must come after first identifying strengths. For most students, it is helpful to have someone else point out two to three strengths for every weakness that is highlighted. The student can be asked directly what talents and strengths they have and then the counselor can add or refine that list of strengths before suggesting areas in need of improvement. For example, during group sessions, I will ask each member what their special talents are and corroborate these positive descriptions. Then I might say “there are some minor issues I want to address with you guys so you can continue to do as well as you are doing.” Then comes the lesson on a skill topic.

There are several more ways to motivate engagement for skill lessons including: linking skill lessons to real-life goals, using entertaining role-plays, linking skill lessons to fun group activities or projects, and creating skill lessons to teach others. This last method of reducing resistance to learning new skills is to have students participate in the teaching of skills to others. By creating picture books, videos or live skits, students can demonstrate the skills to others. As such, they can learn a skill without having to acknowledge that they themselves needed to learn it.

For students without good verbal reasoning skills, increasing motivation cannot involve verbal reasoning. Instead, we may enhance motivation by insuring that our social activities with the student are enjoyable. That may mean we have to make sure the student is not overstimulated by too many people and complicated activities. We might decide to meet one-on-one in a quiet room with little distractions and introduce interactive activities that the student can understand. Researcher Steve Gutstein (2002) has compiled a series of activities from simple to more advanced to help students enjoy social interaction while truly interacting rather than retreating into their own self-stimulation worlds. Early activities to build joint attention might include imitation games like follow the leader, or “follow my eyes to the prize,” where students have to look at an adult’s eyes to find where the adult hid a prize in the room (the adult is looking in the direction of where the prize is hidden). Although these activities have not yet been empirically tested, the concept is reasonable; engage students in activities that limit overstimulation and complexity while focusing on attending to others.

With some motivation to socialize, skills can be more easily taught and generalized. By an additional focus on peer training, we can enhance both sides of the social interaction and create an accepting atmosphere for individuals with ASD to attend school or an employment setting.

Jed Baker, Ph.D., is the director of the Social Skills Training Project in Maplewood, N.J. Dr. Baker has been a clinical psychologist since 1992. He is on the professional advisory board of ASPEN (an information network for parents of children with Asperger Syndrome). He is a behavioral consultant for several New Jersey School systems, where he provides social skills training for students with pervasive developmental disorders and learning disabilities. He directs and supervises social skills training for students at Millburn Public Schools. In addition, he writes, lectures, and provides training across the country on the topic of social skills training for individuals with Asperger Syndrome and related Pervasive Developmental Disorders. He has recently published both a manual on social skills training for children with Asperger Syndrome and a social skill picture book to aid in social skills training.

For more information about Jed Baker, Ph.D. and the Social Skills Training Project, please visit this Web site.

References

Baker, J. E. (2003). Social Skill Picture Books. Arlington, TX: Future Horizons, Inc.

Baker, J. E. (2003). Social skills training for students with Aspergers syndrome and related social communication disorders. Shawnee Mission, Kansas: Autism Aspergers Publishing Company.

Baker, J.E. (In press). Social skills training for the transition from high school to adult life. Arlington, TX: Future Horizons, Inc.

Baker, J.E. (In press). Social skill picture book for teens and adults. Arlington, TX: Future Horizons, Inc.

Gray, C., Dutkiewicz, M., Fleck, C., Moore, L., Cain, S.L., Lindrup, A., Broek, E., Gray, J., & Gray, B. (Eds.). (1993). The social story book. Jenison, MI. Jenison Public Schools.Greenspan, S. I. and Wieder, S., (1998). The Child with Special Needs: Encouraging Intellectual and Emotional Growth. Addison-Wesley, Reading, MAGrodon, J., & LeVasseur, P. (1995). Cognitive picture rehearsal: A system to teach self-control. In K. A. Quill (Ed.), Teaching children with autism. (pp.287-306) Albany, NY: Delmar Publishing.

Gutstein, S. E. & Sheely, R. K. (2002). Relationship development intervention with children, adolescents and adults: Social and emotional development activities for asperger syndrome, autism, PDD, and NLD. London: Jessica Kingsley Publishers Ltd.

Lovaas, O.I. (2003) Teaching Individuals with Developmental Delays: Basic Intervention Techniques. PRO-ED, Inc., Austin, Texas

Sundberg, M.L. and Partington, J. W. (1998). Teaching language to children with autism or other developmental disabilities. Behavioral Analysts, Inc.

Special Section: RUN FOR AUTISM Chicago Marathon Welcomes OAR’s Runners The 2005 RUN FOR AUTISM program took a huge stride forward earlier this month when The LaSalle Bank Chicago Marathon® invited OAR to participate as an Associated Charity. As a result, OAR’s “Runners for Autism” now have the opportunity to choose between two world-class races this year. In 2003, OAR became the first autism charity to participate and partner with the Marine Corps MarathonTM (MCM). In the two years since almost 150 people have taken on the marathon challenge, dedicating their efforts to autism research and raising more than $250,000 in the process. OAR expects this year’s team including the Chicago runners will meet or exceed the first two years’ total. The Chicago Marathon, to be held on Sunday, Oct. 9, draws a field of 40,000 runners. Last year, charity runners combined to raise over $4 million for the charities included in The LaSalle Bank Chicago Marathon® Charity Program. OAR has 20 guaranteed entries for this year’s race and is already half-way to fielding a full team for its first RUN FOR AUTISM - Chicago. “We were looking for the right opportunity to expand our RUN FOR AUTISM,” said Michael V. Maloney, Executive Director of OAR. “And, we couldn’t have found a better race than the Chicago Marathon. It has a reputation second to none among runners and has an equally unparalleled charity program.” Maloney continued, “On a tactical level, our new affiliation with the Chicago Marathon places the RUN FOR AUTISM in America’s heartland and opens the door to more runners from the Midwest and West. At the same time, it will help OAR continue to raise awareness of autism throughout the US while raising funds for new applied autism research.” Registration for either race is on a “first come, first serve” basis. OAR's registration deadline for the Chicago Marathon is Aug. 1 and runners have until Aug. 10 to register for the MCM. To find out more about the races as well as the RUN FOR AUTISM program, please visit the Web site or e-mail the RUN Coordinators, Allison Chance or Caitlin McBrair. The RUN FOR AUTISM program is not limited to the MCM and the Chicago Marathon. Anyone can participate by walking or running in a walk or race of his or her choice of any type and distance and dedicating their efforts to autism research and the RUN FOR AUTISM. Contact OAR for details. OAR Partners to Provide Marathon Training In a major move to enhance the RUN FOR AUTISM program this year, OAR is sponsoring marathon-training programs for runners in both the Washington, D.C. and Chicago metropolitan areas and underwriting the cost. In partnership with DCFIT, a marathon-training program based in Washington, D.C. and USAFIT, a national training program with affiliates located in cities across the country, OAR is able to offer its runners a program that includes team training and the necessary support to get them across the Finish Line. This training support extends to runners in other locations where USAFIT programs exist. Training will begin on May 7 at locations around the country. “In the past two years, we lost a lot of first-time marathoners who wanted to run for us but also wanted help with training,” said Michael V. Maloney, OAR’s Executive Director. “Our partnership with DCFIT and USAFIT addresses that weakness and at the same time will introduce us to more potential runners.” USAFIT also offers an online training program available on its Web site for runners participating in any event. This program is open to all of OAR’s registered runners. Contact OAR staff for details. A Family’s Friend Raises $6K for Autism Research Jim Bell running the HP Houston Marathon in January When Tom Logue put out the word last summer about raising funds for OAR during his preparations to run the RUN FOR AUTISM, he hoped friends and family members would help by donating what they could (to read an article about Tom Logue in the August 2004 issue of The OARacle, click here). Little did he dream that he would raise $10,000 thanks to their support and inspire an old friend to undertake his own fundraising campaign for autism research. Jim Bell responded to Tom’s call for support last fall, then took their friendship to a new level when he decided to follow in his friend’s footsteps by running the HP Houston Marathon on Jan. 16. Grade school classmates back in Williamsport, Pa., Logue and Bell hadn’t talked much since their high school days over 25 years ago. When an article about Columbia, Md. residents Tom, his wife Patti and their 8-year-old son Thomas, who has PDD-NOS, was published in their hometown newspaper last summer, Bell’s mother sent the article to him. Bell, the father of three children who lives in Houston, had planned to undertake the challenge of running his first marathon. After reading about the Logues, he immediately decided he would use the race as a way to help, and dedicated his run to Tom’s son. Logue helped Bell set up a Web site on justgiving.com and donations from family members, friends and business associates poured in, totaling about $6,000. “After reading the story, I just wanted to do something to help,” said Bell, who lives in Houston. “I admire parents of special needs children and I wanted to help families like Tom and Patti’s find answers to challenges they face every day.” Logue and his family were touched by the effort. “Jim is a real hero for all he has done in raising funds for OAR, helping raise awareness, and most especially, for his personal sacrifice in training and competing in a marathon, never having run that distance before.” Bell said the effort had the extra benefit of putting him in touch with his childhood friend again. “We haven’t kept in touch, but in the short period of time since I read that article, we became pals again,” he said. “His kind words mean a lot to me, and it’s a great feeling to know I’ve done some good.”

Resource

Changes in IDEA 2004

Note to readers: In each issue of The OARacle, we provide a helpful resource on a topic of interest within the autism community. This month's article provides a short summary of some of the critical changes in the Individuals with Disabilities Education Improvement Act of 2004 affecting children with autism spectrum disorders (ASD) and their families. Special thanks to Stacy Hultgren from the Connecticut Autism Spectrum Resource Center for allowing OAR to reprint sections of an article previously published in the December 2004 issue of the CT ARSC newsletter.

IDEA (Individuals with Disabilities Education Act), which became law in 1975, goes through periodic reauthorizations by Congress. During these times, Congress can make simple changes and update language – or, they can decide to make radical alterations. In December 2004, IDEA 97 was reauthorized and is now known as the Individuals with Disabilities Education Improvement Act of 2004. This time around, there were many advocates for children with disabilities who lobbied, and lobbied hard, to maintain the protections that are already in the law, and it’s a good thing they did. While some of the changes are minor ones, others could have a major impact on childrens’ programs in negative ways. We can’t really be sure yet how these changes will play out, because the federal regulations (which detail the ways the laws will be implemented) and the state regulations (which can enhance federal law, but cannot take away from it) have not yet been written. The last authorization that took place in 1997 required years to get the corresponding regulations completely in place. The new regulations in IDEA will take effect on July 1, 2005. Below are some of the most critical changes affecting children with autism and their families.

IDEA will not be fully funded
In 1975, when IDEA was born, Congress developed a funding formula that promised to reach ‘full funding’ (which means reimbursement to states of 40 percent of their ‘per pupil’ cost above the costs for typical students) by 1981. But, instead of providing funds to pay for 40 percent of the additional cost of educating a student with disabilities, the federal government provided only 18.6 percent of that additional cost in fiscal year 2004, according to the Council for Exceptional Children (CEC). Congress voted for funding for IDEA to remain a discretionary program, not an entitlement program, thereby not providing mandatory full funding. Appropriators are free to fund IDEA at whatever level is politically expedient. IDEA 2004 authorizes $12.36 billion in funding for fiscal year 2005, with an additional $2.3 billion for each year thereafter through 2011, when, theoretically, full funding will be achieved.

Change in funding to states
IDEA now has language included that specifies states have the option of reserving 10 percent of the ‘state-level activities’ funds to develop a ‘risk pool.’ This pool is intended to be used by local districts to help pay for certain high-need students or unexpected enrollments of special needs students. While apparently these pools were permitted under the ‘97 IDEA, the explicit establishment of the pools is new. CEC believes that this provision now gives some states the go-ahead needed to ensure that the costs of educating high-need students are met. There is also a change in the implementation of a cap on state administration costs. Some special education advocates are concerned about the balance of funds between the state education agencies and local education agencies to implement IDEA. There is also worry that capping funds for state administration may leave states with insufficient funds to administer IDEA.

IDEA funds for support services to non-special education students
IDEA now authorizes districts to use up to 15 percent of their IDEA funds for support services for those students not yet identified as needing special education, but who need additional academic or behavioral support to succeed in the general education environment. Because IDEA is not fully funded and with the authorization of local districts to reduce local expenditures on certain programs below the prior year’s levels, special education advocates worry that there will be fewer funds available to provide free appropriate public education (FAPE) and there is no monitoring system in place to ensure the funds are used for support services. Local education agencies (LEAs) are being urged to develop plans for the most appropriate use of all available funds to provide FAPE to students with disabilities.

Evaluations
Initial evaluations of students to determine if they need special education have a new time limit; districts must complete the evaluation and develop an Individualized Education Program (IEP) within 60 days of referral. Probably of more importance is the new wording that if parents refuse to allow an evaluation of their child, the district is absolved of the need to request a due process hearing to provide programming. Under the new law, if the parents refuse to allow the evaluation to determine need of special education the district is not responsible to provide FAPE, convene a meeting or develop an IEP.

Report upon graduation
Also new is a provision that, upon graduation or aging out of the special education system (age 21), students must be provided with a summary of academic achievement and functional performance including recommendations on how to assist the child in meeting post-secondary goals. The specifics of how these services will be provided and in what form will need to be clarified in final federal regulations.

IEP content
The content of the IEP will change drastically. The new version deletes the need for developing benchmarks and short-term objectives, except for children taking alternate assessments.

The reauthorization revises wording about parents' rights to receive reports on their child’s progress. Currently, the law states that parents are entitled to receive reports of their child’s progress “at least as often as parents are informed of their nondisabled children’s progress” (in other words, at least as often as typical kids receive report cards). It also changes the wording regarding the current requirement to show “the extent to which that progress is sufficient to enable the child to achieve the goals by the end of the year.” Instead, IDEA now simply requires a description of how the child’s progress toward meeting annual goals will be measured and to say when periodic reports of progress will be provided.

The reauthorization also deletes references to transition activities beginning at age 14 (some states allow transition activities at the age of 13), and only specifies that transition goals need to be developed no later than the first IEP after the student’s 16th birthday. It does, however, specify “appropriate measurable post-secondary goals based upon age appropriate transition assessments related to training, education, employment, and where appropriate, independent living skills.”

Multi-Year IEPs
The new bill allows LEAs in up to 15 states, with written consent of the parent, to develop comprehensive multi-year IEPs of up to three years. The goals must enable the child to be involved in, and make progress in, the general education curriculum and meet the child’s other needs that result from their disability. After the review, if the IEP Team determines that the child is not making sufficient progress toward the goals described in the multi-year IEP, the IEP Team is instructed to conduct a thorough review of the plan within 30 calendar days. A report will be issued on the effectiveness of multi-year IEPs two years after regulations go into effect.

PPT Team attendance
A member of the IEP team may now be excused from attending Planning and Placement Team (PPT) meetings if the parent (in writing) and the school district agree that the person’s particular area of curriculum or related services is not being modified or discussed, or if the PPT meeting does involve modification or discussion in their area, the team member may submit input into the development of the IEP in writing prior to the meeting.

If the child is currently served by Birth to Three, an invitation to the child’s PPT (to transition to school) at the request of the parent will be sent to the service coordinator or other representative.

Paperwork reduction
Much talk occurred during the reauthorization process about the excessive paperwork burden of school districts that was needed to conform with laws and regulations. As a result, the new IDEA has established a 15-state pilot program that will be based upon proposals submitted by states wishing to participate. This pilot will investigate possible ways to reduce excessive paperwork and non-instructional time burdens that do not involve civil rights and procedural safeguard requirements. The results of those pilot studies (which could last up to four years) will be submitted to Congress beginning in two years.

The Office of Special Education Programming (OSEP), the Federal office overseeing implementation of IDEA, will be sending model forms for IEP’s, IFSP’s (Birth to Three), Procedural Safeguard notices, and Prior Written Notice forms will be distributed to states).

Amending IEPs
Currently, no changes can take place to the IEP itself (i.e. the services and supports listed, the time or place of delivery, etc.) unless another PPT meeting is held and a new IEP drafted. Under the new IDEA, the district and parents can agree not to hold a PPT meeting to make changes to the current IEP, but may develop a written document that would amend the IEP. Some say the provisions limit the exchange of ideas during meetings and may increase paperwork in the long run.

Discipline
Language was added in the reauthorization giving districts authority on a ‘case-by-case’ basis to consider unique circumstances when ordering a change of placement (i.e. removal to a special education classroom or resource room, to a private special education facility or to homebound instruction) due to a violation of a code of student conduct. Schools may remove students to an interim placement for inflicting serious bodily harm on another person while at school. In the case of a child who violates a code but is not yet eligible for special ed., the parent must have previously put their concerns about their child in writing, and stated that their child needs special ed. services. It will not be deemed that the district ‘had knowledge of a disability’ if the parent did not put their concerns in writing, previously refused an evaluation to determine need for special ed., or if the child was evaluated and found not to be a child with a disability. The length of time that districts may remove the child to an interim alternative setting changes from 45 days to 45 school days.

According to the CEC, caution must be exercised over interpreting what these new requirements may mean until final federal regulations are issued, especially with the controversy that has surrounded the discipline provisions over the past decade. Examples of specific policy areas that will need to be addressed during the regulatory process include: defining “unique circumstances” as they relate to the authority of school personnel to make a change in placement on a “case by case” basis; clarifying the length of time a student may be removed from school, 45 days v. 45 school days; providing additional information on the revised criteria for determining whether a behavior was a manifestation of a student’s disability; and explaining the significance of deleting the definition of “substantial evidence” from the statute.

Attorney fees
Parents may still be awarded reasonable attorney fees from the district if they win in a due process hearing. Districts will now have the right to be awarded reasonable attorney fees from the parent’s attorney if it is determined the action was frivolous, unreasonable or without foundation. They can also collect reasonable attorney fees from the parent’s attorney or the PARENT if the complaint was presented for improper cause, such as harassment, to cause undue delay, or to needlessly increase the cost of litigation (unfortunately, the opposite is not true – although the district may be required to pay attorney fees, the individual administrators would not be at risk of paying attorney fees if they litigate to harass parents. This seems to be a miscarriage of fairness, if not shown to be a violation of parent rights).

Procedural safeguards
The revised IDEA creates a new avenue of dispute resolution called the ”resolution session.” This requires that the district must convene the session prior to a due process hearing, unless both parties agree to waive this requirement in writing or to proceed to mediation. The session must take place within 15 days of the request for a hearing, and must be resolved within 30 days of the request or a hearing may occur. In the event of an agreement, it must be in the form of a binding written agreement, which can be voided by either party within 3 business days.

Please remain vigilant about learning and understanding the new laws and regulations as they become more clear. For more information, parents and caregivers should address questions to their state departments of education or the corresponding agency in their states. Please remember, however, that these changes will not take affect until July 1, 2005, so until that time, current law is still in effect.

Events

April Autism Awareness Celebration
Copacabana, New York
Friday, April 15, 2005

Families and autism professionals are invited to a celebration of autism awareness at the legendary Copacabana nightclub in New York City. This event will be the conclusion of a day-long series of events designed to increase autism awareness organized by the New York Families for Autistic Children (NYFAC).

The private event features an open buffet dinner and unlimited drinks. Guests will also receive goodie bags, be eligible to win raffle prizes and bid on special items during a silent auction. The evening will feature appearances by special guests and performances by musical guests.

Tickets ($200.00 per person) will be available through OAR, NYFAC and other event sponsors. For more information, contact the NYFAC by phone, 718-641-3441 or through its Web site.

Colorado Run/Walk for Autism
Brighton and Castle Rock, Colo.
Sat., April 16 and Sun., April 24, 2005

Help support autism awareness efforts at the 5th annual WAFF WALK. This year’s 5K run/walks and one-mile family walks will be held in two separate cities during April. Starting in Brighton at the Marry Pennock School on April 16, the WAFF WALK will move to Castle Rock Middle School on April 24. The Castle Rock events will also include the first-ever Colorado Autism Half Marathon. The top three male and female finishers of the half-marathon will win expense paid trips to Washington, D.C. for the RUN FOR AUTISM on Oct. 30.

Funds from the events will go to local programs, national advocacy, and autism research. Last year’s run/walk in three cities raised over $45,000 for OAR.

Race participants can create their own Web sites for fundraising and special team registrations will be available this year for interested groups. In addition to race participants, the WAFF WALK organizers are seeking volunteers to help in each city. For more information, please visit the WAFF WALK Web site or contact Kim Anderson, WAFF WALK Administrator, at (303) 688-1995.

Issues in Autism Conference
May 13-14
Atlantic City Convention Center, Atlantic City, N.J.

Join 1,200 parents and professionals at the state's largest conference dedicated to autism-related issues hosted by the New Jersey Center for Outreach and Services for the Autism Community (COSAC). This year's conference features over 70 workshops, 50 exhibits, and a keynote presentation by David Celiberti, Ph.D. entitled "Navigating Autism Treatment Options: Tools to Become a More Informed Consumer."

For more information and to register, contact COSAC at (609) 883-8100 or visit the NJ COSAC Web site.

Other Voices
Carolines on Broadway, New York
Monday, May 16, 2005

You are invited to an evening of comedy and cabaret in the Big Apple benefiting autism research and a New York City women’s theatrical organization. Marking its eighth year on stage, Other Voices is a joint benefit hosted by OAR and Shotgun Productions, a New York City women’s theatrical organization. Last year’s event raised $50,000, the highest total ever. Please help us break another record this year.

The theme for this year’s show is “Broadway Divas.” The night will feature tremendous talents from the Broadway stage to include: Donna McKechnie and Priscilla Lopez (from the original Broadway production of A Chorus Line) and comediennes Julie Halston and Jackie Hoffman. Tickets are $175 per person, and the cost of tables begins at $1,750. The cost includes a cocktail reception, dinner as well as refreshments throughout the evening and an extraordinary show featuring performances by some of the most talented women performers in New York. For more information on tickets and sponsorships, contact Mike Maloney by e-mail or by phone, 703-351-5031.

OAR’s Applied Autism Research and Intervention Conference
Hilton Arlington Hotel, Arlington, Va.
Fri., Oct. 28 and Sat., Oct. 29, 2005

Please mark your calendars for OAR’s 3rd Annual Applied Autism Research and Intervention Conference to be held Oct. 28-29, 2005, at the Hilton Arlington Hotel in Arlington, Va. The Conference will feature presentations and workshops by top autism professionals, leading researchers and experts on various subjects related to education and intervention across the lifespan.

With this conference, OAR will expand the format to include dual tracks on each day. On Fri., Oct. 28, the tracks will be Current Research and Research to Practice. Day two, Oct. 29, will be more practically focused with presentations and workshops organized along two tracks: Autism and High-functioning Autism/Asperger Syndrome.

Plenary sessions will include presentations by Gary Mayerson, an attorney and expert on education issues and IDEA as they pertain to autism, Luke Tsai, M.D., addressing the issues of medication for children on the autism spectrum, and Ann Wagner, Ph.D., Chief of the Autism and Pervasive Developmental Disorders Intervention Research Program at the NIMH, and an NIMH panel discussing and answering questions on the status of research into services. The Conference will also feature presentations by: Peter Gerhardt, Ed.D., Joanne Gerenser, Ph.D., Michael Powers, Psy.D., Michael Fabrizio, MA, BCBA, Suzanne Letso, MA, and Brenda Myles, Ph.D. along with other leading autism professionals.

Please contact Caitlin McBrair by phone at (703) 351- 5031 or by e-mail for more information.

Please feel free to pass this e-newsletter along to a friend.

Funds raised go directly to the identification of research priorities and the funding of applied research grants that will help individuals and families TODAY. Please consider making an online donation through our secure server on our web site. Or if you prefer, please send us your donation to the address below. Donations are fully tax-deductible. Thank you for your support!

OAR is a nonprofit organization established in accordance with section 501(c)(3) of the IRS Code and is incorporated in the Commonwealth of Virginia (EIN#54-2062167). As provided for under the laws of the Commonwealth of Virginia, copies of OAR's financial statements are available upon request form the State Division of Consumer Affairs in the Department of Agriculture and Consumer Services in Richmond, VA.

Organization for Autism Research
2111 Wilson Boulevard, Suite 600
Arlington, VA 22201
(703) 351-5031