By Lori Lapin Jones
The Autism Parent’s Challenge: New Year’s Resolutions for Two
Lori Lapin Jones has been a member of OAR’s Board of Directors since 2005 and the Board’s vice chairwoman since 2010. She resides in Great Neck, New York. Her younger son, Charlie, is a senior in high school and has autism. Her older son, Dan, is a senior in college pursuing a career in special education. Lapin Jones is a volunteer for Special Olympics and has written and spoken on the topic of raising a child with special needs. She maintains a law practice in Great Neck, New York, where she focuses on bankruptcy law and serves as a bankruptcy trustee.
|OAR Vice Chairwoman, Lori Lapin Jones
As I penned my 2012 resolutions, I had two columns to fill in. The first column catalogued my resolutions: eat healthier, exercise more, lighten up a little, and work less. With the exception of “work less,” my second column had the same resolutions, but that column was for my teenage son, Charlie, who has autism. Establishing two sets of resolutions is a reminder that parents of a child with autism have two bodies to care for and two sets of goals to establish, work towards, and monitor. It may sound simple, but there is a catch: parents of kids with autism do not get double the hours in a day or double the days in a week.
OAR needs no reminder of the challenges faced by parents who have kids on the autism spectrum. In virtually all aspects of its work, OAR recognizes that supporting parents directly improves the quality of lives of individuals living with autism. The most direct evidence (there goes the lawyer in me) of our support for parents is OAR’s Web site. The Web site is 24/7 and provides substantive information and resources. When a parent finally gets time in the day to research a specific autism issue – probably about two o’clock in the morning – OAR’s resources are available.
In addition, OAR’s Life Journey through Autism guides cover topics for which parents require immediate information to deal with daily challenges: A Parent’s Guide to Research; A Parent’s Guide to Assessment; and A Guide for Transition to Adulthood. Even the guides intended first for teachers, An Educator’s Guide and An Educator’s Guide to Asperger Syndrome, parents use as personal references and quite often are the ones putting those resources in the hands of their children’s teachers. The guides can be read and downloaded from the Web site free of charge. Many of the guides are available (on the Web site) in Spanish. OAR’s monthly newsletter, The OARacle, is also available on our Web site and feature columns of particular interest to parents written by respected professionals in the autism community.
When our Scientific Council and Board of Directors review research proposals for funding, parents are often a focus. OAR has funded parent-oriented research such as: Evaluation of Synchronous Online Parent Skill Training; Feeding Problems Among Children with Autism: The Impact of Parent Education in Modifying Aberrant Eating Habits; Measuring the Effects of Training Parents to Provide Intervention; and Growing Up on the Autism Spectrum: A Parent Education and Skill Building Curriculum.
OAR is based in Virginia but seeks to reach parents across the country. OAR’s RUN FOR AUTISM program, which began with the Marine Corps Marathon™ in Washington, D.C., in 2003, now has a presence around the country: New York City, Cleveland, Miami, St. Petersburg, Chicago, Houston, Pittsburgh, Philadelphia, Annapolis, and more. OAR’s quality conference, held annually for eight years in Virginia, has recently taken a new form, Conference-on-the-Road, which allows OAR to partner with other autism organizations and reach more parents directly. This year, there will be Conferences-on-the-Road in Ohio and California.
One of the projects of which we are most proud is OAR’s initiative with parents in the military facing the challenges of raising a child with autism. Operation Autism is a Web site expressly for these families. It offers 24/7 access to information and a resource directory. In addition, OAR has a companion resource, Life Journey through Autism: A Guide for Military Families, available in hard copy and accessible on our Web site, that serves as a personal reference for military families impacted by autism. In the past year, OAR has delivered more than 6,000 copies to parents and parent support agencies at military bases in the United States and overseas.
Parents are also welcome to call OAR’s office. When you do, you will actually speak to a person, and not a recording, and we’ll call you back if your message is left at two o’clock in the morning. The OAR staff receives all types of calls, some often beyond OAR’s immediate scope. Nonetheless, they always respond and make every effort to be helpful when providing information, referrals, and resources.
Members of OAR’s Board of Directors have children on the autism spectrum. Thus, the need for a focus on parent education, research, resources and support is borne of a direct understanding of and experience in raising children with autism. We have not yet discovered how to give parents double the hours in a day or double the days in a week, but OAR will continue to meaningfully support parents in helping to fulfill that second column of new year resolutions.
From all of us at OAR, we wish you and your families only the best in 2012.
Cooler than a Gizmo, Autism Plugged In Helps Kids with Autism
And OAR Too!
Jack Kieffer started Autism Plugged In in April of 2011. As a volunteer at the Northwest Special Recreation Association in the Chicago suburbs, he noticed a boy with a communication board, a chart with different pictures and names that helped him communicate. “He couldn't speak, save the occasional yes or no answer, but was able to quickly put together thoughts and ideas with this tool. I figured that there must be an easier and more kid-friendly way to accomplish this than carrying around a small poster board. Upon doing some Internet research, I discovered that many children with autism were using iPads and applications available on iTunes to communicate more effectively. This is what led to Autism Plugged In.”
| Jack Kieffer started Autism Plugged In in April of 2011, as a high school student. More recently, he organized a fundraiser through the site to benefit OAR and its research.
It’s a Great Blog World
Autism Plugged In is a Web site where Kieffer offers information about apps that can be used on iPad, iPhone, and iPods to educate and entertain children with autism spectrum disorders (ASD). Autism Plugged In is Kieffer’s third Web site.
He started his first blog, Cool Gizmo Toys, in early 2008. “I knew some people who were also starting blogs at the time, and it sounded like an interesting thing to do. So, I came up with my own idea and created my own site. With a little bit of determination and a lot of research done on sites like Problogger.net, I was able to grow Cool Gizmo Toys to about 40,000 page views per month.”
Later, he expanded his blogging to include an eco-friendly site, Greenamajigger, a Chicago Now blog (hosted on the official Chicago Tribune website). While he posts less often on this site, he still likes to update it occasionally with articles about environmentally friendly gadgets. At the time, he was interested in freelance writing and thought the blog may be a good first step.
“These efforts led to guest blogging opportunities at sites like Walyou, GeekAlerts, Technabob, and others. Some gigs are paid, some are not - I take what I can get.”
A Teenaged Philanthropist
Why, you may wonder, would such a high-tech, Internet-savvy, creative person admit he “takes what he can get”? In Kieffer’s case, it’s a birth date. He’s only 15, a sophomore at Barrington High School in Barrington, Ill. He runs the three sites on his own, though occasionally leans on his mom for technical help, who, he says, knows “almost as much as I do about SEO and blogging.”
Clearly, he’s not your average high school sophomore. So perhaps it’s not surprising that Kieffer went a step further in his efforts to help children with autism by creating a fundraiser on Autism Plugged In that raised $1,240 for OAR in November and December and the total is still going up. Through Phoneraiser (a firm dedicated to helping the environment by recycling or reusing old cell phones and ink cartridges), Kieffer collected money via Autism Plugged In by asking visitors to the site, local schools, businesses, family, and friends to donate old cell phones and used ink cartridges.
He decided to donate all proceeds earned from Autism Plugged In, including commissions from sales of iTunes Apps as well as Google advertising revenue, on a monthly basis. To date, these sources have generated an additional $204 for OAR, for a total of $1,444.
He found OAR with his parents’ help. They steered him to the Charity Navigator Web site where they “learned that OAR was one of the few autism charities that had earned an overall four out of four star rating and that 86 cents of every dollar went to fund research and programs.
“What I love about OAR is that it's very practical. While most of the other autism organizations are focused on raising awareness or finding a cure, which are both great missions, OAR steps back and asks, ‘What can we do to help these peopleright now?’ OAR and Autism Plugged In have similar goals: improve the condition of day-to-day life for those affected by autism.”
Plenty to Smile About
At 13, Kieffer had been volunteering with a local food pantry, but he was ready for something new. That’s where the Northwest Special Recreation Association (NWSRA) came in. “Friends of our family have a teenage son who is affected by autism. I had heard about him attending Saturday morning recreational classes at NWSRA and thought that volunteering with these kids would be a great opportunity.”
While he’s met challenges like behavior tantrums, Kieffer says the joys far outweigh the challenges. When a child shows progress by doing something new or conquering a task they haven’t been able to do, Kieffer is thrilled. “When you're volunteering with children who have disabilities, the small things are what make you smile.”
While it doesn’t give him the same face-to-face interaction, Kieffer says that Autism Plugged In has given him plenty to smile about as well. “On Autism Plugged In, I get real stories and comments from people who have come to the site. Sometimes, I even get good article ideas. One of my posts has over 600 Facebook shares, something I never get on Cool Gizmo Toys, despite the fact that it receives more traffic.
“The audience is huge, largely unsatisfied by other sites, and is looking for the content that I'm posting,” he notes. “If I had a team of guest bloggers, I bet that I could double its traffic easily. With Autism Plugged In, my other sites, schoolwork, and volunteering, things can get pretty busy.”
Hmm, that may be one of the more understated understatements ever uttered. It’s a good thing for the autism community, and OAR in particular, that Jack Kieffer is a young man for whom the words “busy,” “creative,” and “caring” just keep expanding.
OAR To Publish Guide to Understanding Autism DVD for Secondary Teachers
While one of OAR’s core services has always been to provide resources on education and autism, over the next two years, staff plans to devote a larger focus on this important component of OAR’s work. The first and largest project is Understanding Autism: A Guide for Secondary Teachers, a DVD autism training module for secondary school teachers. OAR is excited to create this resource with grants from the American Legion Child Welfare Foundation, Inc. and the Doug Flutie Jr. Foundation for Autism.
Despite the increasing number of students with autism in schools and advances in understanding autism, challenges remain. Many teachers and administrators have a limited, practical understanding of autism. In a survey completed in 2009 by Saint Joseph College, less than 20 percent of general education teachers surveyed had completed a college course on the behavior and characteristics of children with autism, instruction for children with autism, or Individualized Education Programs (IEPs). Over one-third reported having received no relative instruction. Additionally, 42 percent reported having no instruction on behaviors. For social skills, the percentage of teachers without any relative education or training was 48 percent (Teffs and & Whitbread 2009).
Most significantly, more than half, 54 percent, felt “only somewhat prepared” to include students with autism in their classroom, and 22 percent, one in five teachers, felt not at all prepared.
With the numbers of students with autism increasing, these disparities and gaps must be addressed immediately or the situation will only worsen. Understanding Autism: A Guide for Secondary Teachers will directly address this need.
Understanding Autism is a video-based learning module that will provide a working understanding of autism for both general and special educators and offer practical strategies that can be used immediately in the classroom. Understanding Autism will have applicability for administrators, school specialists, paraprofessionals, and classroom assistants as well. Collaborating with Fairfax County Public Schools and OAR, Scientific Council member Dr. Brenda Myles will ensure this quality resource meets the needs of educators.
In consideration of teachers’ limited time, this program will offer a convenient format for individual, self-paced learning. The curriculum will be organized in an easy-to-use format built around 15-minute modules. Each module or the full one-hour block will also work effectively in support of group training or in-services.
It will be accessible through internal school networks, the Internet, or as a DVD. Understanding Autism will be available for free as a DVD and on the OAR Web site in late 2012. Please contact Allison Gilmour at email@example.com with any questions.
Meet, Mingle, Have Fun, and Benefit OAR at Upcoming Casino Night
Grassroots fundraisers are the heart and soul of OAR. Funds from these events make OAR’s programs and research possible, introduce new people to what OAR does, and expand the OAR community. Theresa and Christopher Waddell’s Casino Night fundraiser is no exception. Last year, it raised over $8,000.
Please join us for the third annual Casino Night on Saturday, February 25, from 8 p.m. to 11 p.m. at the home of Theresa and Christopher Waddell in Arlington, Va.
Not only will you have the chance to play casino games and bid on prizes in the silent auction, this event offers the opportunity to meet, mingle, and have fun with the OAR community. “My favorite part of last year’s event, besides the games and champagne, was seeing people in the OAR community connect,” says Allison Gilmour, director of programs and community outreach. “It was great to see parents and professionals from the DC area get to know one another while supporting a great cause.”
The Waddells have two children on the autism spectrum and have been active with OAR, ASA-Northern Virginia, and the autism community for many years. Together, they have competed in RUN FOR AUTISM events from the 10K to the marathon in Philadelphia, San Antonio, New York City, and Washington, DC.
When asked why they choose to support OAR, Chris Waddell says, “What goes around, comes around. All parents optimistically envision their children’s entire lives, even when these children are still in their mothers’ wombs. The kind of family they will have, where they will attend school, the type of profession they will have. Children provide parents a sense of purpose and hope for the future. We imagine our own immortality as our lives continue through our children.
“When autism presents itself, that vision can get eviscerated. By ourselves, we are neither smart enough, patient enough, nor wealthy enough to see that our children achieve that vision. As a community, when we support great organizations like OAR, the vision starts to come back into focus.”
This year’s Casino Night will be black tie optional and include casino games, a 50/50 raffle, silent auction, champagne, and desserts. Donations will be accepted at the door, but no cash is needed for games. Please RSVP by February 23 to Chris Waddell at firstname.lastname@example.org.
Calling All Graduate and Doctoral Students!
The 2012 Graduate Research Grants Program deadline -- Friday, February 17, 2012 -- is approaching.
The Graduate Research program is intended to encourage and support students conducting research pursuant to graduate and post-graduate studies in disciplines related to assessment, intervention, and support of learners with autism and their families.
The maximum grant awards are $2,000 for doctoral or post-doctoral candidates and $1,000 for master’s candidates.
The application for the Graduate Research Grants Program is available on OAR’s Web site. If you have any questions about the program contact OAR’s Business Manager, Cody Waters, at 703-243-9717 or email@example.com.
Looking for College Students Who are Looking for a Challenge
OAR is looking for summer interns. And not to stand at the copy machine or learn how to make coffee. Consider what our stellar class of interns accomplished last summer:
- Summarized OAR research
- Created a new OAR brochure
- Helped write a new guidebook
- Updated OAR’s resources for military families
- Helped to create What’s up with Nick?, OAR’s soon-to-be-published guide for children
OAR is on the lookout for more talented college students to help with similarly challenging projects this summer. This year’s interns will work on a variety of projects, including:
- Supporting the creation of Understanding Autism, a DVD for secondary school teachers
- Working on Latino outreach programs
- Adding resources to the Operation Autism Web site
- Managing social media
- Supporting the planning and fundraising efforts of the RUN FOR AUTISM
Internships last eight to 10 weeks, and participants receive a modest stipend. All intern positions are in the OAR office in Arlington, Va.
OAR welcomes interest from undergraduate students seeking to apply academic experience in a real-world setting all while helping a good cause. Participants will gain work experience in a nonprofit organization and learn about autism and autism research in the process.
Learn more about OAR internships and the application process.
Delighted to Give Back
Jonathan Campbell Joins OAR’s Scientific Council
An associate professor of educational psychology and instructional technology at the University of Georgia in Athens, Jonathan M. Campbell, PhD, recently joined the Scientific Council of OAR (SCOAR). “I was honored to have been invited to join SCOAR,” he says. “SCOAR consists of a group of highly dedicated individuals with an impressive array of talents, backgrounds, and accomplishments.”
Perhaps even more importantly, Dr. Campbell goes on to say, “I value the contribution of applied research and supporting graduate research efforts in the field of autism; therefore, the mission of OAR is consonant with my own values.”
He also has a more personal reason for accepting the invitation to join the Scientific Council. “My nephew, a brilliant and creative 8-year-old, was diagnosed with autism about four years ago. He is educated in a regular education classroom and the research studies funded by OAR are applicable to his experiences today, including several received by our group at the University of Georgia. OAR-funded research we conducted has examined questions such as whether and how school professionals or parents should educate typical classmates about autism, and what attitudinal and experiential barriers to inclusive education for students with autism exist for various school professionals (i.e., regular education teachers, special education teachers, school psychologists, and school administrators). Information gleaned from these studies has informed what I say to parents and my own family.”
As an OAR-funded researcher, Campbell notes, he has been supported through OAR’s efforts and he’s delighted to able to give back in some small way through his service as a member of the Scientific Council. “I hope to provide useful and helpful guidance with respect to the applied research agenda as set forth by OAR. I also hope to provide useful input in selection of research proposals received by OAR.”
Work that Spans Specialties
Dr. Campbell’s research and clinical interests are focused on assessment and intervention practices for individuals diagnosed with autism spectrum disorders (ASD) in three areas. “First, I am interested in learning how to facilitate peer acceptance of students with ASD in public school settings as well as how to facilitate inclusive educational experiences for students with ASD in public school settings. Second, I am interested in identifying and disseminating evidence-based practices for assessment and intervention for individuals with ASD. Third, I am interested in improving early identification for children with concerns consistent with ASD through evaluating screening instruments, increasing professionals' knowledge of ASD, and improving public health awareness materials for ASD.”
He notes with a smile that he tells people that he is “an odd professional bird. I am trained as a child clinical psychologist, work in a Department of Educational Psychology, and am a faculty member of school psychology. My ongoing interest in the social adjustment and peer experiences of students with autism in public school settings as well as interests in early identification certainly spans each of these subspecialty areas within the field of psychology.
“The most rewarding aspects of my work have been the professional relationships I have built with families of children with autism and mentoring relationships I have developed and maintained with my doctoral students. It has also been rewarding to receive occasional phone calls or e-mails from parents of students with autism stating that they had read some of my work, and it proved helpful to them in advocating for their children.”
The most challenging part of his work is the “‘nuts and bolts’ of data collection with collaborating agencies, such as public school systems, mental health agencies, and hospitals. Coordinating, scheduling, and collecting data in applied service settings can be a real challenge.”
Dr. Campbell has conducted three OAR-funded research studies. He has also presented at OAR’s conference and served as an adjunct reviewer in OAR’s annual Applied Research Competition. Since the beginning of his relationship with OAR in 2004, he has “found the leadership of OAR, both the Board of Directors and Scientific Council, to be a highly dedicated and energetic group with a clear agenda to support applied research in the area of autism.” He has encouraged his students to submit research proposals to OAR's Graduate Student Research competition and several of his advisees have received funding.
Dr. Campbell came to his work with people with autism through his mentor, Dr. Sam Morgan, Professor Emeritus at the University of Memphis, who was interested in aspects of psychosocial adjustment and social functioning for children with autism.
“Upon entering graduate studies in child clinical psychology, I was primarily interested in the role of social adjustment and, peer relationships in particular, in facilitating or hindering psychological and academic functioning for students in elementary and middle school. As one of Dr. Morgan's advisees, I worked with children with autism during my clinical training experiences and realized quickly how children with autism experience difficulties with social functioning and adaptation. It was a natural conceptual and research fit, but I was 'hooked' on working with children with autism after my first clinical experiences in graduate school.”
Facing the Challenges
Today, he sees three primary challenges for those working with people with autism. “The first is building professional capacity to identify autism spectrum disorders early and, more important, intervene early in development. There is promising and exciting work being done by various research groups demonstrating that the trajectory of autism is modifiable when relevant and empirically supported intervention is delivered at young ages. The capacity of communities, however, to provide such services for young children with autism is inadequate in most cases.
“Second, there is a real need to facilitate successful transitions for adults with autism from school settings to work and independent living settings. The focus on young children with autism is reasonable and defensible, but there are a great many others who are transitioning from public school special education programming without much available in communities.
“Third, public schools are the de facto service providers for most students with autism, yet many educational professionals, particularly regular education teachers, have little experience and training in autism. The lack of experience, knowledge, and training often translates into discomfort and resulting exclusion of students with autism. There is a need to provide educational professionals with appropriate pre-service and in-service training and support to work effectively with students with autism spectrum disorders.”
News from the autism community
ACT Today! Offers Funding for Military Families
ACT Today! is a national nonprofit 501(c)(3) organization whose mission is to raise awareness and provide treatment services and support to families to help their children with autism achieve their full potential. As part of that mission, ACT Today! sponsors a grant program to help families who have a child with autism obtain services ranging from applied behavior analysis therapy to social programs to safety equipment and prescriptions and medications.
Recognizing the extraordinary circumstances military families face today, ACT Today! has also launched ACT Today! for Military Families, a dedicated fund to assist military families affected by autism. Military families apply through the same grant process to access these funds for military families.
The organization funds grants on a quarterly basis. Grants are being accepted from January 15 through February 15 for the first quarter and families who receive grants will be notified on March 15.
Visit the Grant Program section of ACT Today!’s Web site at or the ACT Today! for Military Families site.
More Impact than Anything I Have Ever Done: Reflections from the OAR "Family"
As OAR celebrates its 10th anniversary through 2012, we are aware just what it takes to make us the organization we are today. We are surrounded and supported by legions of people who have helped us. We present these perspectives to give you an idea of what OAR represents.
|OAR Vice Chairwoman, Lori Lapin Jones
Lori Lapin Jones, currently OAR’s vice chairwoman and board member since 2005, knew exactly what she was getting into when she agreed to join the OAR Board of Directors. “I had been involved with OAR for almost two years before I became a board member. Accepting the invitation to join the Board was an easy one, as I knew firsthand that OAR and its Board were committed to its mission, that the quality of the research it funded was extremely high, and that OAR was more interested in making an impact than getting publicity.
“OAR serves as, I believe, the only national autism organization dedicated exclusively to applied research and resources. In each project OAR takes on - whether it is funding research, providing scholarships or publishing its Life Journey through Autism guides- OAR is focused on improving the quality of lives of individuals living with autism and their families.”
As a practicing attorney in Great Neck, N.Y., with almost 30 years of experience, Lapin Jones says she “has had a successful, interesting, and dynamic career. Yet, there is not a case, job, or legal success I have experienced that even comes close to the impact that OAR has made in my life.
“I have a teenage son with autism. He has made tremendous strides since he was three years old largely as a result of the tremendous progress made in the autism field. My work with OAR is my way of giving back to the autism community.”
Activity Schedules Help with Children and Adults with Autism
Activity schedules are frequently used with children and adults who have autism. These easy-to-make tools consist of photographs or drawings and tell the user what comes next in a sequence of steps or events. They build on the visual strengths associated with autism and can be used to increase independence and manage transitions.
Researchers Jenna Lequia, M.S. and Wendy Machalicek, Ph.D., BCBA-D at University of Wisconsin-Madison and Mandy J. Rispoli, Ph. D., BCBA-D at Texas A & M University looked at 16 studies involving the use of activity schedules with individuals with autism to determine effectiveness, how they are frequently used, and which populations respond best to this intervention.
They found that activity schedules are most frequently used to assist with self-regulation, independence, transition, and play while decreasing undesirable behaviors. Each of the 16 studies showed improvements in targeted behavior and decreases in undesirable behaviors. Most important, activity schedules had these effects with children and adults on all ranges of the autism spectrum, including individuals with severe communication and adaptive skill deficits.
The researchers do point out that the decrease in undesirable behaviors may be due to factors other than just using activity schedules. Activity schedules are often put in place as part of a larger behavior management plan. They also increase reinforcement from the adults implementing the programs. The use of reinforcement may be the true cause of a decrease in undesirable behaviors.
Activity schedules are an inexpensive and easy-to-use intervention at home and at school, in the community, and in the work place. You can easily create your own using pictures found online or by taking pictures. This resource from the Haring Center at the University of Washington explains how to create an activity schedule: www.haringcenter.washington.edu/sites/default/files/file/ActivityScheduleTipSheet.pdf.
Lequia, J., Machalicek, W., & Rispoli, M.J. (2012). Effects of activity schedules on challenging behavior exhibited in children with autism spectrum disorders: A systematic review. Research in Autism Spectrum Disorders, 6 (1), 480-492.
In 2011, OAR’s Scientific Council selected seven applied research projects for funding. Dr. Hsu-Min Chiang’s project is the first of those that we are featuring in The OARacle.
Studying Factors Related to Employment for High School Students with Autism
Study: Predictive Factors of Participation in Employment for High School Leavers with Autism
Researcher: Hsu-Min Chiang, Ph.D., Teacher’s College at Columbia University, New York City
Purpose: To identify the factors predictive of participation in employment for high school leavers with autism
Why Is This Study Needed?
Although some individuals with autism are able to obtain paid work, the majority of individuals with autism do not participate in employment. Current knowledge about the factors that are predictive of participation in employment for individuals with autism is very limited. To investigate factors that can predict employment outcomes for high school leavers with autism can provide critical information for educators to prepare individuals with autism for postsecondary employment.
Study Methodology In Brief
A secondary data analysis of the National Longitudinal Transition Study 2 (NLTS2) data will be performed. NLTS2 is a 10-year-long study focusing on secondary school students receiving special education across the United States in all disability categories, including autism.
This study will be the first one to identify the predictive factors of participation in employment for high school leavers with autism using a nationally representative data. Because nationally representative data will be used, the findings can provide critical information to transition support service providers for individuals with autism across the United States.
The predictive factors that will be found will provide critical information for educators to design transition programs that are more likely to assist high school leavers with autism to obtain jobs.
Dr. Hsu-Min Chiang, will serve as the principal investigator of the study. She is an assistant professor of special education in the Department of Health and Behavior Studies at Teachers College, Columbia University, New York City. For the past 11 years, Dr. Chiang has concentrated her scholarly efforts and interests on services and research for students with autism. She has bachelor’s, master’s, and doctoral degrees in special education.
By Ryan Rivera
Learning Ways to Stay Calm Through a Child’s Meltdown
Ryan Rivera is the founder and publisher of CalmClinic.com. As someone who spent seven years of his life suffering from, as he calls it, the “whole package” – panic attacks, severe anxiety, agoraphobia, social anxiety, unbearable physical symptoms, headaches, neck pains, constant tension, diarrhea, palpitations, pounding heart, he understands the effects of anxiety and how it can spread to others.
Your child has a lot to handle when it comes to her or his autism. Children with autism spectrum disorders (ASD) experience a great deal of fear, frustration, nervousness, and anger over changes in their routine, anxiety, and problems communicating. When those struggles occur, it is not uncommon for your child to have a meltdown.
One of the most important ways you can help your child is to stay calm. But it’s not uncommon for parents to experience a considerable amount of anxiety themselves when their child is going through one of these meltdowns. That anxiety can be transferred over to the child, and the meltdown itself may worsen or be prolonged. That’s why it is important that you are able to address your own anxiety when your child is in a meltdown, so that you can handle the meltdown calmly and give your child the care that he or she needs.
Personal Anxiety Tips
Develop a Checklist: Anxiety often comes from not knowing what you need to do next. While you may read books and have experience dealing with meltdowns, in the moment, these meltdowns can be quite scary, often with behaviors that may be harmful to your child. Rather than let yourself panic as you figure out what to do next, try to develop an internal checklist for yourself that you mark off one at a time, in order. That will give you something to focus on as you deal with the meltdown.
The checklist can contain questions and next steps such as:
- Is he in danger of hurting himself?
- Is there an obvious cause of the meltdown?
- Try to redirect her toward something productive.
- Reward appropriate behavior.
Creating this type of mental checklist will give you something to focus your mind on so that you’re not caught up in the somewhat chaotic nature of the meltdown. It will allow you to move forward one step at a time and know everything is okay.
Take a Deep Breath: It often sounds like a fairy tale coping tip, but one long, deep breath is often enough to help calm your mind and body. Once you know your child is not in any danger of hurting himself or others, stop what you’re doing, close your eyes, and take one long, deep breath before moving forward. In the worst of the meltdown, it’s easy to forget to take a full breath, which could make your heart work harder and cause you to feel greater levels of anxiety both during and after the meltdown.
Work on Your Day-to-Day Anxiety: Anxiety is often an additive mental health problem. If you regularly experience generalized anxiety, the meltdown will affect you even more physically and mentally. That’s why it’s important to work on your daily levels of stress and anxiety as well. See a therapist if necessary, use relaxation strategies, take supplements, and find a way to experience greater levels of relaxation so that when the meltdown hits you are not already stressed.
Sing a Song/Hum a Tune: The most stressful part of the autism meltdown is focusing on the meltdown. You may be able to reduce this focus if you try to sing a song while you’re dealing with the meltdown symptoms. Choose a song that you personally both love and find relaxing. Then learn all of the lyrics or how the song goes and sing the song to yourself the entire way through. It should be easy to sing the song and multitask, and if you can put some of your attention toward the song, the meltdown should go along faster and less stressfully.
Relax After the Meltdown: Finally, make sure you also relax after the meltdown is over. Sometimes the anxiety is exacerbated waiting for the next meltdown after one is completed. Remember, your child needs you to be as relaxed as possible, so taking a few moments to relax in any way you enjoy is worthwhile not only for your mental health, but for your child's as well. Some examples of effective relaxation strategies include deep breathing, progressive muscle relaxation, visualization, and autogenics.
Keep Calm through Meltdowns: It is important for both you and your child to easily handle the stress of a meltdown. Make sure that you employ anti-anxiety tips that can help you keep that level of calmness that your child needs.
The above list represents just a few of the options available to keep yourself calm during a meltdown, and ultimately help your child calm down quicker.
Ryan Rivera provides information on generalized anxiety disorder and coping strategies at www.calmclinic.com/anxiety.
News for Run for autism
New Partnership Announced with Southern California’s Train 4 Autism
OAR is excited to announce its official partnership with Train 4 Autism as its West Coast training and race partner. Specifically, OAR and Train 4 Autism look forward to providing entries for individuals interested in raising valuable funds and awareness for autism research through this year’s Honda Los Angeles Marathon and Long Beach Marathon as well as the 2013 Surf City Marathon in Huntington Beach, Calif.
Train 4 Autism is a nonprofit organization based primarily in southern California but with a growing presence throughout the United States. The organization is dedicated to bringing together a community of athletes, physically active, and socially conscious people who are committed to raising awareness and funds for research and treatment for those living with autism and their families.
“We’re really excited about this opportunity to work with Train 4 Autism to expand to these key West Coast races. We’ve been very purposeful in our expansion west and I can’t imagine a better partner than Train 4 Autism. They have so much to offer,” says RUN FOR AUTISM Director Lily Matusiak.
And she’s right! Not only will OAR have access to entries for the three races noted, but OAR participants will have access to Train 4 Autism’s various training groups. Groups can be found throughout southern California, Kansas, Maine, Missouri, Ohio, Nevada, Texas, and upstate New York. Train4Autism lists all of its locations on its Web site.
Find more information about these and all of OAR’s partner races on OAR’s Web site. Or contact Lily Matusiak at firstname.lastname@example.org or 703-243-9710 to learn more about how you can join the RUN FOR AUTISM team on the West Coast in 2012 or 2013.
Join OAR in NYC to Run or Cheer
Get Ready to Run
February is the last month to snag an entry with the RUN FOR AUTISM team for the NYC Half Marathon -- 13.1 miles through the city that never sleeps! Charity registration for this March 18th race closes on February 24, and OAR’s limited entries are filling up fast. Sign up today for your sightseeing tour through Central Park, Times Square, and the Southside Seaport.
OAR’s charity race bibs are given to team members who commit to a $1,000 fundraising minimum. Interested participants can initiate the registration process by completing their team registration at www.firstgiving.com/oar/2012nychalf, selecting the “Need Race Entry” option. Registered participants will be sent an invitation to purchase their charity race bib through the New York Road Runners (NYRR).
Already have your race entry through one of the NYRR’s guaranteed entry programs, a time qualification, or through the race’s lottery application? Join the RUN FOR AUTISM by selecting the “Have Race Entry” option when registering with OAR on FirstGiving. Team members who have secured their own entry are asked to commit to a $250 fundraising minimum.
All team members will receive training and fundraising support as they prepare for this exclusive spring race, and they will be treated to race weekend hospitality at a drop-in lunch and at the finish line Charity Village.
Want to learn more about the team? Contact Chelsea Steed, RUN FOR AUTISM coordinator, at email@example.com or call 703-243-9710, ext. 224.
Cheer ’Em On: OAR is looking for strong vocalists, fist pumpers, and sign designers to join our cheers stations along the NYC Half Marathon course this March 18. Come out for all the excitement of race day without the months of training! Join the OAR Cheer Squad today by contacting Chelsea Steed at firstname.lastname@example.org.
Rock, Roll, and Run with OAR in the Nation’s Capital
OAR still has entries to the sold-out SunTrust Rock 'N' Roll USA Marathon and CareFirst Rock 'n' Roll USA Half Marathon, scheduled for March 17 in Washington, DC.
Join OAR to enjoy this scenic run alongside the Potomac River, the National Mall, and some of our country's most historic monuments. Whether you are running 13.1 miles or taking on all 26.2, you have never seen DC like this before.
Runners who commit to fundraising $600 will receive free entry to this sold-out race. If you have already registered for the race, you can still be part of OAR’s team if you are willing to raise at least $250 for autism research.
All team members have access to complimentary hospitality and gear check as well as fundraising and training support from the RUN FOR AUTISM staff. Become a member of OAR’s RUN FOR AUTISM-USA team and find out how it feels to raise money, fund research, and change lives.
E-mail Sean Flynn at email@example.com, visit www.researchautism.org, or call (703) 243-9712 to join or for more information.
OAR Has Plans for Cleveland…Find Out How You Can Be Part of Them
The RUN FOR AUTISM is bustling with excitement in preparation for the Rite Aid Cleveland Marathon weekend on May 19 and 20, featuring a full marathon, half marathon, 10K, and 5K. OAR is returning for its second year as the Presenting Charity of the 5K on Saturday, May 19. OAR will also have RUN FOR AUTISM teams in the 10K, half marathon, and marathon, all taking place on Sunday, May 20.
Want to know how it feels to run on to the Cleveland Browns field with eager fans cheering you on? Sign up for the Rite Aid Cleveland 5K today and enjoy running through the finish line on the Browns field!
On Sunday, your chosen run will wind you through downtown Cleveland past major landmarks such as the Rock ‘n’ Roll Hall of Fame and Cleveland Browns Stadium.
What else is on tap for Cleveland in 2012? OAR is reaching out to Northeast Ohio schools, police officers, and firefighters to take part in the RUN FOR AUTISM Cleveland challenges. Firefighters will be squaring up against police officers, schools will engage in friendly competition against each other, and everyone is sure to have a memorable race day. These competitions are designed to raise funds for autism research, promote health and fitness, and increase autism awareness within the greater Cleveland community.
Create your own team to tackle the Cleveland streets for applied autism research. Registration has already kicked off for all events. For more information, contact Alexandra van Wees at 703-243-9710 or firstname.lastname@example.org.
Fit to Smile? Then OAR Has an Opportunity for You in Pittsburgh
The RUN FOR AUTISM team for the May 6 Dick’s Sporting Goods Pittsburgh Marathon is bigger and better than ever, and OAR has many volunteer opportunities available for those interested in supporting the team.
Mix volunteering with a little shopping by helping out at the Health and Fitness Expo at the David L. Lawrence Convention Center on Friday, May 4, between 11 a.m. and 6 p.m. or on Saturday, May 5, between 9 a.m. and 6 p.m. Volunteers will help OAR staff members represent the organization, field questions from Expo attendees, recruit future runners, and hand out literature. Shifts are flexible and last two to three hours.
OAR gladly provides a free RUN FOR AUTISM t-shirt to all who lend their time, and community service letters can be provided for school credit.
Cheer in the team after they cross the finish line by volunteering at Sunday’s Charity Village tent (location TBD). Shifts are available between 9 a.m. and 2 p.m., and volunteers will help check runners in, take pictures, and keep snacks and drinks stocked.
Get in on the race day fun!
Have a large group? We also have opportunities to volunteer directly with the Pittsburgh Marathon. Don’t let your group size keep you from lending a hand. There’s room for everyone!
For information on how to participate, email RUN FOR AUTISM Coordinator Chelsea Steed at email@example.com.
Why we Run
For the Rays, One Reason is Enough: a Happy Daughter
Kevin and Miranda Ray don’t have a lot of time to run. He’s in the Navy, often out to sea, and she’s raising their three children, Aubrey, 9, Addison, 6, and Alexa, 4. As you can imagine, time is at a premium.
But, for their daughter, Aubrey, and others like her, the Rays found time to train for and run in the Walt Disney World Marathon (adding a family vacation to the end, of course), which took place the first weekend in January.
| Kevin and Miranda Ray (shown here with their children,Addison, 6,Aubrey, 9, and Alexa, 4) decided to run the Disney Marathon through OARs iRUN program because iRUN allows them to pick the events that suit their busy lives.
A Happy Girl
When Aubrey was diagnosed with Asperger Syndrome at 8, it was a relief in many ways, says her dad. “It helped us better understand how to deal with behavior that we previously thought was just defiant or bad or puzzling.”
Today, her mother notes proudly, Aubrey is a happy girl who enjoys being a good big sister to her siblings, loves animals, and does well in school (thanks in part to a special program in the Auburn, Ala., school system, which has a great reputation for doing a good job with children on the autism spectrum, say the Rays).
She’s gotten into running too. She really enjoys it,” explains Miranda. She’s done a 5K and a few 3Ks as well. “Her goal is to do a 10K next.”
A Program For Runners Everywhere
They decided to run the Disney Marathon through OAR’s iRUN program because it suits their busy lives and because Kevin got a description of OAR from a fellow Marine Corps Marathon runner that made it easy to put OAR at the top of their list. “He said of all the groups he’s interacted with, OAR is a lot better and more personable.”
As of the end of the Walt Disney World Marathon, this couple who runs together (though rarely when they train) has raised $1,000 for OAR.
Happy to Support Us
“The fundraising was pretty easy,” Kevin notes. He and Miranda were impressed by the immediate and expansive generosity shown by their friends and family, exemplified by old friends who donated $500 as soon as they saw the Rays’ request on Facebook.
“We asked them if they accidentally added a 0,” Miranda says. “But they said no, they just wanted to support Aubrey and us.”
Another friend who owns a T-shirt shop volunteered to print shirts with “Team Aubrey” on them. “We had so many people asking about our shirts at the marathon,” Miranda says.
Throughout their training and fundraising experience, the Rays have been delighted by the response to their efforts. “People are happy to support us and really eager to find out more about autism when they know a family who has been affected by it.”
While an upcoming ship assignment for Kevin and relocation for the whole family has their running future on hold, Kevin says they are sure they will continue to run and raise money for OAR.
For busy people like the Rays, the iRUN FOR AUTISM program is a great way to support OAR and run, walk, bike, hike, swim, or any event anywhere, anytime, and at any distance. Most races do not have a minimum requirement and OAR's RUN staff will provide you with a race shirt, race day technical shirt, training tips, and fundraising support to ensure your success.
Can Reservists Receive ECHO Benefits for Their Children?
OAR frequently receives questions from military reservists and their spouses regarding their eligibility for services through the Extended Care Health Option (ECHO) for their dependents with autism. ECHO coverage is available for dependents of active duty military members who are enrolled in Exceptional Family Member Program (EFMP).
Accessed through the military healthcare program, TRICARE provides support for military families that have a child on the autism spectrum through the military healthcare program, including provision of autism services provider of autism through ECHO. Unfortunately those services are only available to reservists on active duty.
For the children of reservists to receive ECHO benefits, their parent must be on active duty for more than 30 days. If a parent is on active duty, he or she can enroll in EFMP and then enroll with ECHO through TRICARE. Once the parent is off active duty, the child may no longer access services through ECHO.
Accessed through the military healthcare program, TRICARE provides support for military families that have a child on the autism spectrum through the military healthcare program, including provision of autism services provider of autism through ECHO. Unfortunately those services are only available to reservists on active duty.
Because the majority of reservists do not serve on active duty for lengthy periods of time, their access to ECHO is intermittent at best. For this reason, it is very important that military reservists’ dependents with autism spectrum disorders be enrolled in early intervention programs and special education services through the public schools. This will provide some continuity of services if the child can no longer receive supplemental services through ECHO. Read more about how to qualify for ECHO services.
Science, fads, and applied behavior analysis
By Thomas Zane, Ph.D., BCBA-D
What Does the Evidence Show Us?
A Review of the Soma Rapid Prompt Method
Dr. Thomas Zane is a professor of education and director of the Applied Behavior Analysis Online Program at the Van Loan Graduate School of Endicott College. He is a licensed psychologist in New York and Massachusetts. Dr. Zane has published in various journals and books, presented at regional, national, and international conferences, and been an invited lecturer in Ireland and the Republic of China. His research interests include teacher training, staff development, and evidenced-based practice in autism. As part of his duties at Endicott College, he offers a BCBA certificate program through distance learning.
One of the primary characteristics of Pervasive Developmental Disorders (PDD) is communication impairment (APA, 1994). These can take many forms, such as a complete lack of or delay in the developmental of spoken language, an inability to use any functional communication, an inability to initiate or sustain reciprocal conversation, and odd speech mannerisms (e.g., scripting).
A large number of therapeutic strategies to treat communication disorders are available. The Soma® Rapid Prompt Method (RPM), developed by Soma Mukhopadhyay (HALO, 2012), is one of them. The purpose of this article is to review RPM in terms of its conceptual underpinnings, methodology, and – most importantly – the extent to which there exists an empirical research database showing that this particular method is effective in improving specific aspects of communication.
It is important to review RPM for several reasons:
- Upon examination, its methodology appears to align closely with that of Facilitated Communication (FC), which has been thoroughly discredited as effective and is now considered a fad and ineffective treatment (e.g., Wheeler, 1993).
- Mukhopadhyay claims that RPM “…is the most direct and unlimited path to learning and communicating” (HALO, 2012) and “always works” for any child with whom it is used (Mukhopadhyay, 2011, personal communication). Such a claim of universal effectiveness brings to mind Carl Sagan’s axiom that “extraordinary claims require extraordinary evidence.”
- It has a high profile (1,180,000 hits on Google Search), as evidenced by Mukhopadhyay recently presenting at the prestigious Massachusetts Institute of Technology Simons Initiative on Autism and The Brain (http://autism.mit.edu/past_colloquia).
Mukhopadhyay is the executive director of education at Helping Autism through Learning and Outreach (HALO), a clinic in Austin Texas, through which she provides 1:1 instruction for students with autism spectrum disorders (ASD) and other developmental disabilities. The mission of HALO is to use RPM for “…improving academic success and communication for persons with autism and similar disorders” (HALO, 2012). Initially, Mukhopadhyay developed the Rapid Prompt Method around 1991 to help her son, Tito, who was diagnosed with autism at 3 years old. She claims that RPM was responsible for his incredible progress, and thus she began offering it to others.
What is RPM?
RPM is a method of promoting expressive language and overall academic success and communication abilities. According to Mukhopadhyay, explaining RPM requires an understanding of how the brain works, in that RPM is based on the latest brain research, unlike other treatment protocols.
Generally speaking, the process of communicating is made up of a number of complex steps. For example, a listener must “take in” information, mentally prepare a response to it, and then utilize the muscular system to physical communicate that response. This elaborate process occurs almost effortlessly and unconsciously for most people, but for children with ASD and other disabilities, this process often breaks down and results in communication disorders.
Mukhopadhyay believes that recent research on how the brain functions are able to translate into improved clinical methodologies. The conceptual basis for RPM is a focus on activating “…the reasoning part of the brain so that the student becomes distracted by and engaged in learning” (HALO, 2012). Student progress is enhanced “…through the open learning channel…” by eliciting “… the best out of the child to enable maximum output in that given time. As a student’s cognitive and motor proficiency increases, the sophistication of a student’s response also improves” (HALO, 2012).
According to Mukhopadhyay, RPM involves the use of prompts across all modalities – auditory, visual, and tactile. Typically, the instructor and student use paper and pencil during the lessons. Like FC, the RPM teacher facilitates the student’s hand, forearm, or arm, as he or she types, points, or responds in whatever form is selected for that student.
How does RPM Work?
One of the rules of RPM is for the teacher to match the pace of teaching to the student’s speed of stereotypic behaviors. So, a teacher might continue speaking, teaching, and asking for responses from the student, at a quick pace if the child is engaging in frequent stereotypy. According to Mukhopadhyay, this results in the student staying focused on the lesson. The type of stereotypy is important, in that it connotes the “learning channel” that might be best used for maximum learning. For example, for a child who engages in ritualistic behavior for apparent auditory feedback, Mukhopadhyay would use auditory stimulation to promote the presentation and learning of lessons.
An interesting ploy is the use of tearing paper during the lesson. Mukhopadhyay explains that by doing so, it provides a multisensory prompt (auditory, visual, and kinesthetic) to assist the student to remain focused on the learning activity. The teacher is asked to sit on the right side of the student to, again, stimulate left-brain auditory learning.
Another teaching rule is to change the subject matter of the lesson to stimulate the side of the brain one wishes to stimulate, particularly the left side that presumably controls communication. Typically, a lesson begins with a few questions or sentences related to a single topic or focus. Possible answers are initially written on paper. The teacher taps the choices of answers while reading them out loud, and then encourages the student to select one. As progress ensues, Mukhopadhyay increases the response requirement of the student, from picking up pieces of paper, to pointing to the answers, then to pointing to letters to spell out the answers.
Mukhopadhyay says that she has worked with over 600 clients, ranging in ages from 2 to 50 years, including persons who are nonverbal, verbal, have echolalia, and “low” and “high” functioning.
What is the Evidence for or against RPM’s Effectiveness?
Given the increasing demand for evidenced-based practices in autism and education in general (No Child Left Behind, 2012), it is important to ask what evidence exists that RPM causes any improvement in communication, academics, or social skills.
One level of evidence is personal reports of progress from people who have used RPM. At the HALO website, there are several testimonials from parents that support the improvement of their children after beginning RPM.
A more stringent (and more valid) level of evidence is empirical investigations using commonly accepted research methodology. Through online searches of professional databases, 14 articles about RPM were found. Ten were book reviews of autism that included Mukhopadhyay and the RPM. The remaining four involved newspaper or popular magazines (e.g., Ladies Home Journal) that provided human-interest stories about this treatment approach towards autism, Mukhopadhyay, and her son. No article was found that described an attempt to systematically test the effectiveness of RPM under controlled conditions commonly used in a scientific approach.
Another consideration which impacts the degree to which consumers could be confident of RPM being effective relates to the theoretical underpinnings of this approach. Mukhopadhyay asserts that RPM is unique among therapies due to its foundation in current brain research. However, little has been published on exactly what brain research is applicable to her treatment, nor does she provide references or citations to support these claims. Last, Mukhopadhyay holds degrees in education and chemistry. Although her academic background is noteworthy, she has not apparently been formally trained in neuroscience, neurology, or other areas that would provide expert preparation in translating brain research to autism treatment.
Conclusions and Recommendations
RPM is a popular method used to treat communication disorders in individuals with ASD and similar disabilities. Unfortunately, as of this date, there exist no research studies conducted to ascertain whether or not RPM is responsible for any improvement of any autistic symptomology. Although testimonies from parents and consumers of RPM support the effectiveness of this approach, the standard of acceptable evidence remains that obtained from a scientific analysis. This scientific approach involves commonly accepted criteria for acceptable research, such as the use of research designs, operational definitions of key terms, clear descriptions of the treatment strategies and approaches, reliability and validity of measurement, and replications of effect.
At this point in time Soma®RPM must be considered an unproven treatment. It appears to fall into the category of pseudoscientific treatments, which is a class of unproven therapies that appear to be based on science, but yet fail to demonstrate scientifically supported positive results. Although absence of evidence is not in and of itself evidence of absence of effectiveness, clinicians and treatment providers should not at this time recommend this treatment approach for use.
At this point in time, RPM should only be used in research contexts, in which applied experimenters test the effectiveness of RPM under controlled conditions. Perhaps such studies will show it to be effective. Until then, interventionists should not consider its use and instead adhere to using methods proven to be evidenced-based practices.
Parents and caregivers should examine the therapies that are evidenced-based that could positively enhance communication abilities, such as speech therapy and PECS.
American Psychiatric Association (1994). Diagnostic and statistical manual of mental
disorders. Fourth Edition. Washington, D. C.: American Psychiatric Association.
Helping Autism through Learning and Outreach (HALO; 2012). Retrieved January 6,
2012 at http://www.halo-soma.org.
Massachusetts Institute of Technology Simons Initiative on Autism and The Brain. Retrieved January 6, 2012 at http://autism.mit.edu/past_colloquia.
No Child Left Behind Act (2012). Retrieved January 8, 2012 at http://www2.ed.gov/nclb/landing.jhtml.
Van Acker, R. (2006). Outlook on special education practice. Focus on Exceptional Children, 38(8), 8-18.
Wheeler D. (1993). An experimental assessment of facilitated communication. Mental Retardation, 31, 49-60.