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March 2010 |
OAR News
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OAR is pleased to announce that its Annual Applied Autism Research and Intervention Conference will be held on October 29-30, 2010, in Arlington, VA and is in final negotiations with the new conference venue. The location under consideration is readily accessible via Metro and offers on-premises parking.
Join us in the City of Bridges, Steel, and Heinz Ketchup on May 2! This will be OAR’s first year as a Charity Partner with the Pittsburgh Marathon and the OAR team is looking forward to a fantastic run with this SOLD OUT race. But don’t worry if you didn’t register before it closed, OAR still has a small number of entries to the marathon, half marathon and marathon relay. This event will give you (and your friends and family) a chance to participate in a sold-out race event, raise money for OAR, and conquer the City of Champions.
The Historic Half runs through 13.1 miles of scenic and historic landmarks in and around Fredericksburg, the scene of one of the greatest Union defeats during the Civil War. Runners pass through the University of Mary Washington campus and along Sunken Road, which formed the base of an impenetrable Confederate stronghold and was the scene of vicious fighting during the Battle of Fredericksburg. The course runs on near the Kenmore Plantation; and through the peach blossoms and roses of the old Rappahannock Canal to a finish in scenic old town Fredericksburg. The Semper Fred 5K, sister race of the Historic Half, runs an adapted course of 3.1 miles and provides runner and walkers another opportunity to participate.
Spring is just around the corner. What better way to celebrate than by getting outside, spending time with friends and family, and tackling a personal or fitness goal while making a tangible difference in the lives of others? If this sounds appealing to you, OAR invites you to join the RUN FOR AUTISM in Cleveland on May 16!
The Marine Corps Marathon (MCM) likes to do something special with each five-year anniversary. For the 30th anniversary in 2005, the MCM expanded the field to 30,000 runners. While nothing that dramatic is planned for the 35th running on October 31, the race organizers announced some exciting changes for this year’s race at the MCM’s annual Charity Summit at Quantico, VA, which OAR staff attended on March 11. 
On Saturday, February 13, 2010, a half inch of snow blanketed the ground in Myrtle Beach, SC, and thermometers proclaimed that it was cold outside (in the 30s). The City of Myrtle Beach decided that this was no weather to run in, and it cancelled the Myrtle Beach Half Marathon.. |
Michelle Reddick crosses the finish line at the Florida Ironman in November. |
In talking to those who have done both, what comes shining through is not how hard it is but how much inspiration and strength they draw from their motivation for raising money. Take Michelle Reddick, who completed the Florida Ironman in November while raising $3,375.00 for OAR, and Scott Nipper, who will do the Memorial Herman Ironman 70.3, which takes place on April 25 in Galveston, TX, and has just started his fundraising efforts.
“My 9-year-old niece has autism and I wanted to be able to do something not just for myself,” says Reddick, a physician’s assistant who lives in Houston, TX. “As I have watched her struggle to meet her challenges, I thought that raising money for OAR was one of the best things I could do for her.” “The first event she did while raising money for OAR was the Houston Marathon in 2008. While raising money isn’t easy, Reddick says that hearing stories from her supporters makes the effort worthwhile. “When people found out my niece has autism, they asked me all kinds of questions and I can help educate them. People tell me stories about the people they know with autism. It’s a common denominator.”
It’s also a common denominator for Nipper, also a Houston resident, who has been a special education teacher for the past 15 years. For the last five, his focus has been children with autism. “I’m a behavior analysis intern at an ABA [applied behavior analysis] clinic here in Houston. I saw OAR listed at one of the half marathons I ran. Knowing I had a triathlon coming up, I thought I could use the race to connect to my work. It was especially exciting that OAR sponsors applied research, since I’m doing my own applied research.”
The importance of what he’s doing by raising money for OAR through triathlons came home to him when he heard Mary Jane Weiss, Ph.D., an OAR-funded researcher and the director of research and training at the Douglass Developmental Disabilities Center, speak at a workshop. “She talked about the importance of research and how it’s unique that OAR focuses on applied research. Knowing that I’m helping with that is a neat experience.”
Crossing the Finish Line
Both Nipper and Reddick acknowledge that training for and doing Ironman events can be grueling. Reddick, 38, admits with a laugh that the best thing about doing the Ironman is “crossing the finish line at the end of the race.” That’s why, she says, having a goal outside of herself—raising money for OAR—is great. “It’s another goal that keeps me pushing during all the training I do.”
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Scott Nipper pushes himself through the marathon part of the Longhorn Ironman 70.3 in Austin, Texas, in October. |
It takes a lot of dedication to put in the time and money that training and completing the events take, explains Nipper. But, he continues, “the events are very inspiring. You’re outdoors, volunteers are cheering you on and you have that feeling of accomplishment when you complete the triathlon. Being there is what motivates me even when training isn’t fun.”
This was Reddick’s fifth Ironman. She’s also completed 12 marathons. “When I first started training for triathlons, I couldn’t even run a mile,” Reddick says ruefully. But that soon changed. She started training for her first marathon when another friend asked her to do a sprint triathlon; she did it, followed by a half Ironman. In 2007, she completed her first marathon in January and her first full Ironman in April. She was inspired by the story of a father, Dick Hoyt, she heard at church who did triathletes with his son, who is disabled. “He pushes him on a bike, runs with him in a stroller, and swims with him in a dinghy tied to his ankle. If he can do it, why can’t I?”
Now 40, Nipper is a triathlon veteran, having completed 10 since he was 16. “Lance Armstrong, yes, that Lance Armstrong, won the first triathlon I did,” Nipper relates. Though he doesn’t blame Armstrong, Nipper did take a 20-year break after that event, getting back into triathlons four years ago.
“My sister talked me into a half-marathon. I was out of shape so I started running again. Once I started running, the next step was triathlons.” He met friends at his church who also did triathlons and knowing other people made continuing easier, he says.
For both Reddick and Nipper, the satisfaction of completing a marathon or an Ironman overcomes the challenges every time. That’s what keeps them putting in that extra mile day after day after day. In that, it’s not unlike the lives of people with autism and their families, who overcome challenges every day and revel in the satisfaction of tasks accomplished and goals met. OAR salutes TRI FOR AUTISM athletes like Nipper and Reddick who represent those families with the money they raise and the miles they swim, bike, and walk in support of them!
News from the Autism Community
SUNY Stony Brook Seeks Survey Takers for Research Project
A research team at SUNY Stony Brook is currently conducting a study on the relationship between the challenges of family life and intervention outcomes and is looking for mothers of children with autism spectrum disorders between the ages of 2 and 8 to participate in this study by completing a survey. The goal of the study is to acknowledge the challenges of family life when a child has autism and allow researchers to understand these difficulties better so that effective supports can be provided.
Participation involves completing a survey about your psychological well-being, relationships between family members, family resources, and your child’s level of problem behavior. The survey will take approximately 1 hour to complete. The research team will mail it to you to complete upon receiving your request to participate. At the conclusion of this study, you will receive a $10 Target giftcard in appreciation for your participation.
If you are interested in participating or have questions, please contact Samara Pulver Tetenbaum at (516) 662-5013 or spulver@notes.cc.sunysb.edu.
HOW TO: KEEPING YOUR CHILD SAFE
By Kate Britton, M.S.Ed., M.A., BCBA and Bridget A. Taylor, PsyD, BCBA-D
Take Practical Steps to Ensure Your Child’s Safety
Bridget Taylor is executive director and Kate Britton is the principal and assistant director of Alpine Learning Group, a Paramus, NJ-based program that provides learners with autism and their families comprehensive, scientifically validated educational and behavioral services designed to foster individual growth and personal achievement.
Picture it: You are at home alone with your three children, one of whom has autism. You are cooking dinner for your family when your phone rings. You answer it, diverting your attention from your children for one split second. When you turn back to check on your children, the front door is open and your child with autism is missing. You look out the door and your child is nowhere in sight.
It’s your worst nightmare: Not knowing if your child is safe or in harm’s way. This fear is intensified if your child has difficulty communicating, does not differentiate between safe and unsafe situations, does not follow instructions consistently, and does not have the ability to defend himself.
Children with autism present with unique communication and behavioral issues that increase their risk of getting lost and injured. Parents of children with autism often fear their children with autism will get lost and be unable to communicate effectively to ensure their safety. In fact, in an online survey conducted by the National Autism Association, 92 percent of the parents indicated their child with autism was at risk of wandering away from his or her home or care provider.
These steps can ensure your child’s safety (some resources for more information are included at the end of the article):
Step 1: Secure Your Home and Yard
One of the most important and practical things you can do is to secure your home and yard area so that your child is less likely to wander away. Many children quickly learn how to operate standard locks on exit doors. Install locks on doors and gates in the yard that your child cannot open. (Deadbolts that require keys on both sides of the doors or hook eyes that are too high for the child to reach are good examples.) In addition, install an alarm system that signals when a door or window is opened. There are a variety of systems available, including high-tech and low-tech options.
If you want to monitor your child from another room, you could use a video monitoring system or a baby monitor that has video monitoring capability. If you have a pool or a pool is nearby, install a pool alarm and encourage your neighbors who have pools to do the same. If your child goes into pools unsupervised, you can also use the Turtle, which is a wristband that locks securely around your child’s wrists and sounds an alarm if it immersed in water.
Step 2: Keep Emergency Responders Informed
Call your local non-emergency telephone number and ask personnel to note in the 911 database that someone with autism lives at your address. If there was ever an emergency in your home, the emergency responders will know in advance that they need to respond accordingly. You can purchase and display decals on windows and doors to indicate a child with autism lives at your home.
If your child is at risk of wandering, bring a picture along with information about your child and autism in general to the local police station for the station to keep on file. Let the station officer know your child is at risk of wandering. This information will be helpful in locating your child sooner and help identify your child in the event he or she is found and brought to a police station by someone else.
Step 3: Inform Your Neighbors
View your neighbors as another set of eyes. Give them a picture of your child along with some helpful information about your child (e.g., he is unable to speak, she responds to simple commands, he likes to swim so please keep your pool gate locked) and about autism in general. Also include your cell phone and home numbers so that they can call in the event they ever see your child wandering away from the house or walking the street unaccompanied by an adult.
Step 4: Register Your Child
Register with the National Child Identification Program.[link to www.childidprogram.com] The program also provides a kit that includes information on everything law enforcement would need, such as instructions on how to fingerprint your child, in case of an emergency.
Step 5: Purchase Medical Identification Jewelry
The first question a stranger is likely to ask your child is, “What’s your name?” So it is important that your child can be understood by listeners who don’t know your child. If your child will not be understood or can’t relay enough information, you could use medical identification jewelry, such as a bracelet. Some companies only engrave an ID number and the company’s phone number, and when the company receives a call, a company representative contacts the parent or guardian. Other companies engrave whatever you request such as “Autism – Nonverbal,” allergies, and/or your cell phone number.
Step 6: Plan Ahead for Vacations or Community Outings
Vacations should be enjoyable but are often stressful especially if your child is prone to wandering. Before choosing a vacation destination, determine the potential risk for your child with autism. For example, if your child tends to wander to swimming areas, you would not want a room near the pool or you may even stay in a location that does not have a pool. When arriving at your destination, inform the staff about your child and advise them that she will require supervision at all times and if they see her unsupervised to call you immediately. In addition, consider using portable door alarms for hotel rooms. If your child tends to wander, consider using child-locator systems or a global positioning system (GPS). There are also low-tech tracking devices, and some phone companies have designed cell phones with GPS programming.
Step 7: Teach Functional Safety Skills
It’s essential to teach your child skills that will increase his safety. Work with your child’s school or treatment program to include the following safety goals in your child’s individualized education plan (IEP):
- Responding to name: Teach your child to turn around and orient to you when his name is called.
- Responding to “Come here”: Teach your child to come to you when you say, “Come here.” Practice this skill across many environments, including outside in the play yard and at the park.
- Answering social questions: Teach your child to answer social questions that are relevant for safety (e.g., “Where do you live?” or “What is your mother’s name?” or “What is your mother’s cell phone number?”). Teach your child to respond to these questions in varied presentations (e.g., “Who are you?” and “What is your name?”). Be sure your child can be understood by novel listeners. If you child has an augmentative communication system, teach your child to answer these questions by activating her system.
- Asking for permission to leave the house or yard area: Teach your child to approach you and ask to go for a walk or to go to a specific location.
- Asking to go to preferred locations/places: Teach your child the names of his preferred locations (e.g., park, ice cream store, etc.) and teach him to request to go to these locations by name or by exchanging a picture of a place. Photos of the places could be hung on the inside front door to serve as a prompt for your child to request a preferred location.
- Holding hands: Teach your younger child to hold your hand when you are walking in the community. While this sounds like a simple goal, some children with autism may require specific teaching in cooperating with hand holding especially in the community.
- Crossing streets: Teach your child the skill of waiting at cross walks until no cars are present or until you give her permission to cross the street.
- Walking/staying with an adult: Teach your child to follow alongside of you when you walk in the community, without holding his hand. This skill should be practiced in school or home first and then in the community.
- Waiting appropriately: Teach your child to wait next to you in varied locations and in line at department stores.
- Cooperating with wearing medical identification jewelry: Teach your child to tolerate wearing an identification bracelet or necklace.
- Exchanging an identification card: Teach your child to take an identification card out of her pocket or wallet when asked different types of question such as “Are you lost?” or “What is your name?”
- Answering a cell phone and following directions and answering questions: Teach your child to follow directions on the phone (e.g., “Walk to the kitchen” or “Find an adult”), and to answer questions on the phone (e.g., “Where are you?”).
- Declining inappropriate instructions: Teach your child to walk away and say “No!” when given an inappropriate instruction from a stranger (e.g., if a novel person says, “Come with me,” or “Give me your wallet,” the child is taught to say, “No” and walk away to find a familiar person to report what happened). When teaching, use novel people so the child distinguishes whom to respond to in this manner.
- Identifying a stranger: Teach your child to identify strangers versus familiar people in photos and then in the presence of novel people and familiar people. Teach your child the types of interactions that are appropriate with familiar people and those that are not with a stranger.
- Exiting a home/building during a fire alarm: Teach your child a place to exit to in the event of a fire alarm or home emergency (e.g., always to the driveway and wait in a specific spot).
- Swimming: Teach your child to swim. Many local community centers have swim programs for children with disabilities.
Some Helpful Resources
Security
www.addalock.com
www.childsafetystore.com
www.protectmefirst.com
www.x10.com
www.poolguard.com
www.safetyturtle.com
www.protectmefirst.com (door guard alarms)
Identification and Registration
www.iloveachildwithautism.com
www.childidprogram.com
www.medicalert.org
www.kidsafeid.com (identification cards)
Location Systems/Devices
www.projectlifesaver.com
www.Caretrack.com
www.ion-kids.com
www.protectmefirst.com
www.uLocate.com
General
www.mypreciouskid.com/child-autism-safety.html
www.autismriskmanagement.com/
www.papremisealert.com/
www.leanonus.org
SCIENCE, FADS, and BEHAVIOR ANALYSIS
By Thomas Zane, Ph.D., BCBA-D, Center for Applied Behavior Analysis at The Sage Colleges, Troy, New York
A Review of Relationship Development Intervention: Is It An Evidence-Based Effective Treatment?
Thomas Zane, Ph.D., BCBA-D, a licensed psychologist, is an associate professor in the School of Education and the founder and director of the Center for Applied Behavior Analysis at The Sage Colleges. He has published in various journals and books and presented at regional, national, and international conferences. His research interests include teacher training, staff development, and evidenced-based practice in autism.
This article was first published in its original form in Autism Spectrum News, Winter 2010, 2(3), p. 21.
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Dr. Thomas Zane, Ph.D., BCBA-D |
Relationship Development Intervention (RDI), a treatment for autism developed by Steven Gutstein, Ph.D., focuses on increasing social awareness through the use of dynamic intelligence (Morris, 2009). Parents use RDI with their children, since the general goal of the treatment is more natural and complete interactions among family members. Morris and others (e.g., Gutstein & Sheely, 2002) have outlined the types of methods and goals built into RDI, including dynamic analysis, flexible problem solving, and resilience. The number of RDI therapists has steadily increased over the past several years, suggesting an increasing popularity of this treatment.
However, an important question is whether RDI can be considered an empirically validated treatment. One facet of autism science is the adherence to “evidenced-based practice” (EBP), a requirement that those who work with persons with autism use strategies and tactics that have been tested and thoroughly researched and found to have an empirically demonstrated improvement in some aspect of the autism condition. Most of the major organizations that promote the treatment of autism, including OAR, support this requirement.
For this article, a literature review was conducted and any published article found related to RDI was reviewed to determine if it met the criterion of a “research” study, such as a test of whether or not RDI intervention caused the change in a group of participants or a comparison of RDI to other interventions in autism or education.
This search uncovered only one published article that evaluated the effectiveness of RDI (Gutstein, Burgess, & Montfort, 2007). The authors reviewed the files of 16 children who ranged in ages from 20 to 96 months, representing various diagnoses of autism (e.g., Asperger Syndrome, Pervasive Development Disorder – Not Otherwise Specified (PDD-NOS), and autism). Many of these children had been receiving treatment based on the RDI model for up to 30 months. The authors measured three variables to assess whether or not the children improved due to the RDI intervention:
- A subset of 13 items from the Autism Diagnostic Observation Schedule (ADOS; Lord, Rutter, Dilavore, & Risi, 2002) and the Autism Diagnostic Interview-Revised (ADI-R)
- The results of a “flexibility interview,” developed by Dr. Gutstein, et al., in which parents used a self-report Liekert scale to rate the degree to which they thought their children exhibited “rigidity” in their behavioral adaptation and thinking
- Educational placement of the participants, which involved parents and teachers subjectively reporting the type of school placement in which the children resided (ranging from mainstreaming with no special education services to full-time placement with special education support)
Dr. Gutstein and his colleagues collected data on these measurements prior to and following the children’s participation in RDI for an average of 18 months. Following treatment, Dr. Gutstein, et al. reported:
- Improvement in ADOS diagnosis
- Improvement in “age appropriate flexibility” to routines
- More children participating in less restrictive, more mainstreamed educational placements
The authors concluded that RDI was a “promising program for remediating critical experience-sharing difficulties…” of children with autism (p. 409). They hypothesized that the RDI treatment was causally related to the positive changes in the children.
Does the Evidence Add Up?
For a treatment to be considered within the category of EBP, there is general agreement that there must exist “multiple” research studies, done by a variety of researchers, that show the treatment to be effective (e.g., Chambless, Baker, Baucom, Beutler, Calhoun, Crits-Christoph, et al., 1998). With only one study published on testing whether RDI results in any improvement in participants with autism, it seems that RDI does not pass this initial criterion.
Furthermore, it is unclear whether or not the positive conclusions made by Dr. Gutstein and colleagues concerning RDI in this current study are actually warranted. Upon careful examination of the design and methodology of the study, it seems as if there are methodological problems with this study that prevent confidence in the conclusions offered by the authors.
For example, the research design used in this study involved one group of participants, with measurements taken prior to and after the RDI intervention. This type of design is a “one group pretest-postest design” (e.g., Fraenkel & Wallen, 2009; Gay, Mills, & Airasian, 2009). It is important to note that this type of design is universally considered weak in that it does not control for threats to internal validity. This research design offers unconvincing evidence that the treatment was the sole reason for changes in the dependent measures (e.g., Fraenkel & Wallen 2009). Study participants may have improved on the measures due to reasons unrelated to RDI, such as maturation.
Two other issues related to the research design prevent clearly assuming that RDI was responsible for improvement in the participants. First, an important criterion for a well-designed study is proof of treatment implementation (i.e., procedural integrity; Gresham, Beebe-Frankenberger, & MacMillan, 1999). Dr. Gutstein and colleagues not only failed to provide detailed information about what RDI treatment protocols were employed, they also failed to provide any check on whether or not the treatment providers actually implemented the RDI strategies as intended.
A second essential criterion for “believability” of research is measurement reliability (e.g, Gay, et al. 2009). Specifically, researchers are required to provide evidence to support the belief that the dependent variables measured in the study were measured reliably, often accomplished by having a second independent observer measure the participants at the same time (and then comparing results) or by demonstrating that standardized instruments have pre-determined reliability and validity. In the study, of the four dependent variables, the authors mentioned that inter-rater reliability was obtained (successfully) with one measure (ADOS) and that the ADI-R developers reported satisfactory reliability. However, because only a subset of items of the ADOS and ADI-R were measured, the validity of these two assessments was compromised.
Conclusion
Due to the weak research methodology used by Dr. Gutstein, et al. (2007), the lack of fundamental research methodology, and the existence of only one formal assessment of the effectiveness of this autism treatment, RDI at this time should not be considered to be a treatment that has evidence of effectiveness. Until well-designed research studies are done and validate the effectiveness of RDI, treatment providers and other caregivers should carefully consider whether RDI is appropriate to use.
References
Fraenkel, J. R., & Wallen, N. E. (2009). How to Design and Evaluate Research in Education, Seventh Edition. New York: McGraw-Hill.
Gay, L. R., Mills, G. E., & Airasian, P. (2009). Educational Research: Competencies for Analysis and Applications, Ninth Edition. Upper Saddle River, NJ: Pearson
Gresham, F. M., Beebe-Frankenberger, M. E., & MacMllan, D. L. (1999). A selective review of treatments for children with autism: Description and methodological considerations. School Psychology Review, 28(4), 559-575.
Gutstein, S. (2001). Solving the Relationship Puzzle. Arlington, TX: Future Horizons.
Gutstein, S., & Sheely, R. (2002). Relationship Development Intervention with Young Children: Social and Emotional Development Activities for Asperger Syndrome, Autism, PDD, and NLD. London: Jessica Kingsley.
Jacobson, J. W., Foxx, R. M., & Mulick, J. A. (2005). Controversial Therapies for Developmental Disabilities: Fad, Fashion, and Science in Professional Practice. Mahwah, NJ: Lawrence Erlbaum Associates.
Lord, C., Rutter, M., Dilavore, P., & Risi, S. (2002). Autism Diagnostic Observation Schedule. Los Angeles, CA: Western Psychological Services.
Morris, R. (2009). Relationship Development Intervention. Autism Spectrum News, Fall 2009.
Zane, T., Davis, C., & Rosswurm, M. (2009). The Cost of Fad Treatments in Autism. Journal of Early and Intensive Behavior Intervention, 5(2), 44-51.FOCUS ON OAR RESEARCH
OAR-Funded Research Creates Program to Promote High School Inclusion for Students with Autism Spectrum Disorders
A woman with Asperger syndrome offered a comment in response to a Sacramento Bee article, “Rise in autistic adults worries caregivers,” published in 2009:
It’s about time. As a 51-year-old adult female with Asperger syndrome, I have long been frustrated by the fact that, as one of this article’s subheadings indicates, “Research focuses on children.” Because of this, the M____ Institute, which we are fortunate to have right in our own backyard, has been of limited help to me. I have always worked and supported myself, but it’s getting harder every year…Thanks for highlighting the needs of autistic adults.
As this woman tellingly relates, adulthood can be a difficult time for individuals with autism spectrum disorders (ASD). Post-high school expectations for most students include college, job training, or employment opportunities. However, adult outcomes for even the most able youth with ASD often are bleak in light of the social demands presented by both educational and employment settings. Failure to acknowledge or respond and adapt to the social expectations of postsecondary settings can lead to job loss and limited success in college and everyday life for young adults with ASD.
About This Researcher |
It is critical, says OAR-funded researcher Carolyn Hughes, Ph.D. that we begin to address the social behavior of adolescents with ASD while they are still in school. Many of the post-secondary students facing bleak prospects today did not have the opportunity to benefit from social skills training when they were younger.
For many high school students with autism spectrum disorders (ASD), high school is not a positive experience. They spend their school days socially isolated from their peers without disabilities even when they are educated in the same classrooms or share the same lunch hours or physical education classes. One reason for this apparent isolation is the difficulty youth with ASD typically display in communicating and interacting socially. These youth are often viewed as “different,” but not sufficiently different from their peers to require supports for their limited social skills.
However, without sufficient support, anxiety, loneliness, and depression are commonly reported for these students due to their social isolation. Parents of students with ASD report their children’s difficulty with understanding social situations, initiating conversations, and responding to social cues as a barrier to participation in many school activities. And, say these parents, their children’s peers are often unsure how to interact with their classmates with ASD.
Few efforts have been directed at the high school level to promote social interaction among students with ASD and their peers without disabilities. The typical high school day presents a number of challenges to the inclusion of students with ASD in the everyday activities of their peers. These challenges include 50-minute class scheduling, an increasing focus on academics and preparation for exit and college entrance exams, negative attitudes toward students with disabilities, classroom versus community-based instruction, and increasing demands on teachers.
Dr. Hughes, a professor in the Department of Special Education at Peabody College, Vanderbilt University, is conducting a one-year pilot project designed to teach social interaction skills among students with ASD and their peers and promote the inclusion of these students in both academic and non-academic activities throughout their school day and across multiple settings, such as general education classes, physical education classes, the library, or cafeteria.
The program is designed with several unique features that Dr. Hughes hopes can be replicated in high schools across the country:
- Teaching social interaction skills in the actual everyday high school settings in which these students spend their time
- Expanding the role of the peer as a mentor to teach social interaction skills, facilitate social inclusion, and help students with ASD to “fit in” socially
- Training and supporting peer mentors in their interactions with students with ASD
How the Project Will Work
The project will begin with five to six students with ASD and 25 peer mentors in the first part of the study during the spring of 2010. After Dr. Hughes refines the model, five to six additional students with ASD and 25 additional peer mentors will participate in the fall of 2010. The intervention will comprise three components:
- Teaching valued social interaction skills via peer mediation
- Supporting students without disabilities in their social interactions with their peers with ASD
- Providing inclusive opportunities for students with and without ASD to interact with each other across multiple environments and activities
Teaching valued social skills (Component 1) will include direct instruction, modeling, role plays, opportunities for practice, and corrective reinforcement. Peer mentors will help facilitate skills training to promote generalization of newly acquired skills and to serve as role models of appropriate social and communicative behavior. Dr. Hughes will also incorporate the input of teachers, parents, and other stakeholders in order to ensure a socially valid intervention within the context of the high school environment.
Supporting peer mentors (Component 2) will consist of:
- Ensuring that peer mentors and their classmates with disabilities are provided sufficient support
- Monitoring, communicating with, and obtaining feedback from participating peer mentors
- Setting up an ongoing peer mentor club
- Teaching peer mentors skills to support the social needs of their classmates with ASD
Providing inclusive opportunities for social interaction (Component 3) will make use of peer mentors to serve as brokers to expand opportunities for social interaction among students with and without ASD. For example, during lunch in the school cafeteria, students with and without disabilities typically eat at separate tables. To facilitate social interaction, peer mentors will invite students with ASD to sit at the same table with them and their friends and join in their conversation. Or during physical education class, peer mentors could invite their classmates with ASD to join them in a game of basketball or badminton. In a chemistry class, peer mentors could partner with students with ASD in class activities, such as conducting experiments.
Projected Outcomes
Dr. Hughes anticipates that this project will:
- Expand the peer buddy model for teaching social interaction skills to high school students developed by Hughes and Carter (2008) to a “peer mentor” model in which peers facilitate social interaction opportunities for students with ASD.
- Develop and implement a model for providing support and training to peer mentors in their interactions with students with ASD.
- Prove effective in promoting the acquisition and generalization of valued social skills by students with ASD and their opportunities to interact socially with peers.
- Offer an acceptable model to students with ASD, peers, parents, teachers, and others that will effectively increase interaction among students with and without ASD.
She anticipates these outcomes from her project:
- Students with ASD can expect to learn new social interaction skills and receive increased peer support that will result in their having more friends in their general education classes and greater participation in general education activities.
- General education peer mentors will learn to support the inclusion of their peers with ASD in everyday school life and will gain new friendships with their peers.
- Parents of students with ASD and general education peers will benefit by knowing that their children are attending high schools that are more welcoming of individual differences and that the classes their children attend are more inclusive of students with a range of skills and abilities.
- Teachers will benefit by having the opportunity to learn a new strategy that will help students with ASD be more accepted at school and more successful in their peer interactions.
- Researchers will benefit by the addition of knowledge to the database of empirically based strategies to improve outcomes for youth and young adults with ASD—a population that has received comparatively less research attention particularly in the “real life,” everyday setting of students’ high school environments.
Profile
Doing Something Really Good in the World: The Children’s National Medical Center’s Center for Autism Spectrum Disorders
As far as Laura Anthony, Ph.D. is concerned, what makes her job at the Children’s National Medical Center’s Center for Autism Spectrum Disorders in Washington, DC so rewarding can be summed up in a word: metamorphosis.
“When a child comes in who has been misdiagnosed as emotionally disturbed and center doctors make a correct ASD diagnosis and create a treatment plan that works, the child blossoms into a different child. Then I just love my job. I believe that we as a team have done something really good in the world,” says Dr. Anthony, who has been at the center for four years.
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Drs. Laura Anthony (left) and Lauren Kenworthy have found their work at Children's National Medical Center's Center for Autism Disorders to be rewarding on many levels. |
It is that ability to assess a child’s strengths and weaknesses and create a plan that allows the child to function at his or her fullest potential that sets the center apart, says Lauren Kenworthy, Ph.D., the center’s director. “While we serve a range of children, from infants to adults, our focus is on children four years old and older whose cognitive functioning is unimpaired but who have difficulties with social skills. Our specialists look at a range of things to create a detailed assessment of strengths and weaknesses and to identify what environment is best for the child, including how she or he should be taught, what accommodations are needed in the classroom, and what interventions are needed outside the classroom.”
The center can also help parents understand and talk to school personnel or, in some cases, center staff will talk to school personnel to figure out how the child’s behavior can be improved. So many things can make a difference, she says. “Children with ASD can be overloaded or overwhelmed by large noisy settings like the cafeteria or the gym. A child with ASD may be less flexible and that inflexibility can be misinterpreted by the teacher.”
Created eight years ago, which is when Dr. Kenworthy became the center’s director as well, the center brought together a range of specialists and services that formerly were available at Children’s but not all in one place. “We had so much expertise here, but services were scattered throughout hospital.” Today, staff at the center includes specialists in developmental/clinical psychology, neuropsychology, developmental neuropsychology, psychiatry, and speech and language pathology. As needed, the staff can call on other specialists at the Children’s National Medical Center.
The center’s work can be broken down into four major activities: clinical services; research; professional training through externships, internships, and fellowships for professionals in neuropsychology, psychology and psychiatry; and community education and advocacy. The center evaluates and provides services for children from infancy to young adulthood, serving approximately 500 a year. It specializes in the diagnosis and evaluation of children with primary deficits in social cognition, communication, and executive function.
From Research to Practice
In addition to the services the center provides to children and families, staff at the center also conducts a variety of research studies, investigating the genetic, neurocognitive, behavioral, and social factors associated with autism. In fact, Drs. Anthony and Kenworthy and their team developed an intervention to help children with Asperger Syndrome/High-Functioning Autism (AS/HFA) improve their flexibility in school that was first funded by OAR. Because there are no tested school-based executive function interventions for children with AS/HFA, the project builds on an executive function cognitive remediation intervention for children with traumatic brain injury.
“We’re very excited about the larger-scale launch of the intervention. OAR was the first to take a leap of faith with this project, and we are so grateful,” explains Dr. Anthony, who expects to receive formal notification of an NIH grant for the larger-scale launch. What makes the intervention unique, she says, is that it addresses the cognitive aspects rather than the social skill deficits of autism spectrum disorders.
They partnered with the Ivymount School, a private school in Rockville, MD, that has developed the Model Asperger’s Program for children in 2nd-9th grades. The project was split into two phases: development and testing. In the development phase, the investigators, working with Ivymount staff and parents, created an executive function intervention that can be used by teachers, clinicians, parents, and others. At the end of the development phase, they wrote a manual to guide teachers through the process.
The intervention is aimed at teaching flexibility skills in the classroom through an integrated program of cognitive instruction, guided practice, and strategies for generalization. Incentives for change were also built into every component of the program, including helping the students identify and work toward their own goals.
“The kids participating in the trial gave us formal feedback on the intervention through PowerPoint presentations to the whole research team. It was one of the best days in my life, listening to the kids make the presentations on what they learned, what they liked and what they didn’t like,” says Dr. Anthony. “And that is exactly what the intervention was supposed to do—help them be able to move from detail to the bigger picture.”
The NIH grant will help the center expand the use of the intervention into public schools around the Washington, DC area, which will extend the program to 45 more children with AS/HFA. The project will also include a companion parent component with training sessions, workshops, and a manual.
Reaching Out
In addition to clinical services and research, the center provides professional training and community education and advocacy. Drs. Kenworthy and Anthony point to the LEND program as a great example of both professional training and community advocacy. The LEND program, which stands for Leadership Education in Neurodevelopmental and Related Disabilities is funded under the 2006 Combating Autism Act and administered by the Health Resources and Service's Administration's (HRSA) Maternal and Child Health Bureau. LEND prepares trainees from diverse professional disciplines to assume leadership roles in their respective fields.
This year, explains Anthony, the center is working with six fellows, including two who worked at OAR. Each fellow does rotations in different areas and one of those is community advocacy, she says. “To be a leader, you have to understand community advocacy and policy.”
“The fellows we have here rotate through a variety of CNMC clinics, including multidisciplinary teams, an assessment clinic for 0 to 3 year olds, and a developmental pediatrics clinic. They also observe at the Ivymount school, in addition to working in an organization like OAR that does community outreach. Our fellows have included occupational therapists, physical therapists, physicians, psychologists, and nurses,” Dr. Kenworthy says.
Along with the LEND program, the center works actively year round to disseminate up-to-date information to families, patients, school personnel, physicians and other health providers, and community agency personnel through seminars, workshops, in-services, and consultations as well as talks by faculty, newsletters, lecture series, and other outreach.
What Dr. Kenworthy likes about the center and the work it does is the concrete benefits it offers to children with ASD and their families. “We can uncover the source of some of the unexpected behaviors parents and teachers see in children with autism AND we can help parents and teachers understand those behaviors and know how to work with them.”
Which leaves us where we started with the center—the children. And they are the best part of the job as far as the doctors are concerned. “They are interesting kids with remarkable capacities and specific quirky behaviors that are interesting to explore and understand,” notes Dr. Kenworthy. “And they are great people, easy to like and fun to work with.”
