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.

References

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.

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.

“Sometime along the course in the Crystal City area, I witnessed an extraordinary moment. I saw a father and son (I think) wearing OAR shirts…The younger man or perhaps he was a teen was happily running along with rosy cheeks and clearly enjoying the sheer delight of freedom at that moment, more or less oblivious to the thousands of others around him. The other man, a male relative or friend, was close behind…

“I just wanted to write and say (though I really can’t describe it) how moving it was to see this father’s love and dedication to the best interest of his child. Quite a pair of athletes! And what a team of ambassadors for OAR!”

That father and son pair were Wilson Chua and his 15-year-old son, Wallace, who has autism. They crossed the finish line to cheers from mom, Irene, and brother, Cameron, 8,who had come from the family’s home in Ashburn, Va., for the big day.

They were not the only father-son duo on the 10K course that day. Jay Kennard and his son, Andrew, 9, were also out running to raise money for OAR on behalf of son and brother, Chris, 7, who stayed home in Green Bay, Wisc., with mom, Mary Kennard. While Chris couldn’t be with them at the 10K, he knew what they were doing.

Altogether, the Chuas and the Kennards raised $2,300 through the Marine Corps Marathon 10K. Wilson and Jay have both run in previous marathons for OAR.

Time Together

While the funds raised for OAR are certainly a key part of this story, an even larger part of the story is about the father-son bond. As Andrew puts it, “I wanted to do something with my dad and I had lots of fun running the first 10K.”

Training and running the 10K was a great way for the two of them to spend time together, says Jay. “We’d just talk during runs. He would make up a funny way to run, like a penguin, for example. If it started raining, he might say, ‘Dad, we have to do something about this rain. Let’s penguin the rain.’”

Wilson Chua came up with the idea to run the 10K with Wallace. “Last year, at the completion of my fifth Marine Corps Marathon, I decided to take a year off running the marathon, and wanted to get Wallace involved. I thought it would be meaningful for him to run and raise money for autism research. I also thought that running would be a good exercise for him as well. I knew it would be a big challenge for him as he has never run more than a quarter mile in the past.”

He is appreciative that Wallace was willing to give it a try. “He’s a very easygoing person. He would go along with almost everything that we have asked him to do, even though he might not like some of them.”

As it turned out, both father and son enjoyed the 10K. Wallace told his dad after the 10K that “we are going to try the ‘Woodrow Wilson Bridge Half Marathon’ next year.” And that’s the plan, Wilson confirms. He has run the Woodrow Wilson Bridge Half Marathon twice before to raise the awareness and money for autism research. The Chuas have an even bigger goal for the future: We hope that we can “both run the Marine Corps Marathon together!”

The Sky is the Limit

The Chuas started their training with one-mile walks a couple of months before the Marine Corps 10K. The weekend before the 10K, Wallace and Wilson ran and walked 6.2 miles. It wasn’t always easy, Wilson says, because Wallace needs constant verbal prompts and a push from behind to keep going. It was worth it though, he adds, to spend time with Wallace, and “get him out of the house to get healthy.” They also had the company of Wilson’s younger son, Cameron, who would go along on the training runs on his bike.

Wallace attends Heritage High School. Diagnosed with autism at 3, he often struggles with communication, academics, social/leisure activities, and functional skills, his dad says. He has limited language, and his answers are in a few words at the most.

For all of the struggles Wallace faces and the things he cannot do, his dad sees the potential in his son. “I realize that ‘nothing is impossible’ for him. Given opportunities and people being patient with him, the sky is the limit. For example, a couple years ago, Wallace was not able to swim 10 meters. Now, after years of practice, he can swim over 1,000 meters.”

At 9, Andrew was a veteran runner by the time he and his dad signed up for the Marine Corps Marathon. Along with schoolmates, he had participated in the Bellin Run, a local run that benefits the hospital. “We trained at school. There were 110 kids running the 10K.” That experience prepared him for running and training with his dad. When the time came to train for the Marine Corps Marathon 10K, Jay and Andrew ran two or three miles three times a week.

A meta-analysis takes existing data from research publications to answer new research questions. This technique can provide more statistically significant results than each piece of research alone, partly due to the increase in sample size. In this study, Effects of Physical Exercise on Autism Spectrum Disorders: A Meta-Analysis, the researchers searched for studies from the past 10 years regarding autism and exercise. They chose 16 studies, for a total of 133 participants, to use in the meta-analysis.

The results showed an up to 35 percent improvement in core autism deficits (communication skills, social interaction, and motor performance) following participation in an exercise program. Exercise programs included jogging, swimming, horseback riding, cycling, weight training, and walking. Interestingly, individual exercise routines, i.e., those not completed in a group setting, led to the largest improvements in social interaction. Overall, participating in an exercise program increased skills in social interaction and motor performance but only had a small positive effect on communication.

Start the new year off by incorporating 30 minutes of walking (or another fitness activity your child likes) into your child’s daily routine. Past studies have shown that individuals with autism are more likely to be sedentary than the general population. While exercise provides obvious health benefits, the benefits for people with autism are even more significant.

References

Sowa, Michelle and Ruud Meulenbroek. (2012). Effects of physical exercise on Autism Spectrum Disorders: A meta-analysis. Research in Autism Spectrum Disorders, 6 (1), 46-57.

How has 2011 turned out for you and your family? Are you satisfied with the progress made on your goals and those of your loved ones? Are you pleased with the quality time you spent with relatives? Did you like the gifts you gave and those received?

Working with children with autism and their families has given me a whole new perspective on reviewing the progress of the last year and planning for next. Eating healthier foods should have been easy for me. It was difficult in the Jones household because they have a 6-year-old son with autism who has PICA (a pattern of eating non-food materials).

Hosting a holiday party for my family and serving food and drink should have been easy for me. It was difficult in the Smith household. They have a 10-year-old child with autism who likes to turn cups upside down and watch the liquid spill on the floor.

Putting up and taking down a tree in my house was easy compared to the stress it caused in the Brown household. They have a 15-year-old daughter with autism who cannot tolerate change. Re-arranging the furniture to make room for the tree was extremely unsettling. By the time she got used to it, it was time to take it down and re-arrange the furniture again!

Buying presents for my friends and family should have been easy compared to the stress it evoked in the Kelly family. They have 4-year-old twins with autism and had no idea what they wanted for Christmas. They’d love to have asked their children, but both girls are non- verbal and cannot request their needs and wants, not even by pointing to pictures.

Start Now for 2012 Holidays
Many children with autism may engage in problem behavior when offered non-preferred foods, or when asked to wait in line. Activities to which children with autism are infrequently exposed (like these annual holiday events), may also evoke problem behavior. In many cases, the problem behavior serves as a means to communicate a need or to avoid an unpleasant situation. This infrequent exposure, combined with fears associated with sitting on Santa’s lap, going to new places, wearing new things and being in overcrowded chaotic environments, prevents some children with autism and their families from participating in holiday festivities.

Breathing a sigh of relief that the holiday season is coming to an end, and hoping and praying for a better year to come will not ensure better outcomes in the future. Systematically teaching specific skills and behaviors can help people with autism successfully navigate these “real life” situations and achieve better outcomes. This is a perfect time of year to make your new year’s res-OAR-lution.

Set goals that are Objective, Accountable and Realistic:

• John will increase his repertoire of foods by trying at least three new food items before the end of the school year.
• Joseph will sign, “no, thank you” when offered a non-preferred food.
• Sammy will request a non-edible item from Santa this year (meaning she will develop an interest in toys).
• James will wait appropriately in line in the store while Mom purchases gifts for the family.
• Sammy will open a present, smile, and say, “thank you” to the person who gave her the present.
• Bryan will wear something other than sweatpants to school.
• Jimmy will wait at least 10 seconds for a requested item. This means accepting treats on Halloween, putting them in his bag, and waiting to eat them until after dinner.

You may be thinking that these are goals that ALL kids (adults) ought to strive to achieve. True. The difference, however, is that most children with autism will not learn these skills by observing their peers and siblings. Children with autism need to be systematically taught these skills and behaviors. Repetition and intensity of instruction is critical. Opportunity for practice is mandatory.

Acquisition of such skills may take a very long time. Don’t give up, keep at it! In the meantime, until mastery is achieved, it’s okay to create situations in which your kids and family are more likely to be successful. Avoid food fights; serve chicken nuggets and French fries with your ham and turkey. Don’t pack away the trains from under the tree; add them to your Thomas the Tank Engine collection.

Remember to celebrate all the progress you and your family made last year and get started with your new year’s res-OAR-lutions.

The month and the season mean even more this December
Because we now have 10 years to look back and remember,
So in the spirit of the season and this major milestone
We’ll try once again to tell a rhyme of our own.

On December 13 in 2001,
OAR’s founders set out to get something done,
To fund autism research that offered answers and clues
And give parents answers they knew they could use.

In 2003, we started the RUN FOR AUTISM Team
That brought together thousands of people with a similar dream.
They’ve raised almost four million dollars running races near and far,
While their efforts and inspiration have helped OAR raise the bar.

Fast forward to 2011 and what do we find?
OAR’s reputation for excellence continues to climb.
134 studies and six guidebooks later
And a 4-star rating from Charity Navigator.

It isn’t just $2.5 million in research that gives us pride.
It’s 55 persons with autism on partial scholarship rides,
Pursuing studies in vocational schools and colleges both two-year and four
Thanks to gifts from the Schwallies, Lisa Hussman, and programs through OAR.

But it’s the countless little things that OAR tries to do
That become value-added for others all the year through,
Responding to questions from parents under duress
And offering evidence-based answers for them to assess.

While we’re proud to celebrate the first 10 years of OAR
Our eyes are on the horizon, our goal to do more.
OAR strives for a future in which every person with autism thrives
With your help we’ll continue to fund research and change lives.

If you’re reading this note, you’re connected in some way
To autism, OAR, and what we do every day.
As we open a new decade of scientific study and learning
May the promise of research keep the fires of hope burning.

Best wishes for the holidays and a happy new year from OAR.

They point out that even seemingly harmless behavior can have major effects on both the child and family. A child who is engaging in repetitive behavior may become socially isolated and miss out on learning opportunities or a child who plays repetitively and incorrectly with toys will miss out on the learning opportunities that accompany playing.

While little research has been done on interventions to decrease this behavior, there have been some studies conducted on using reinforcement-based interventions to decrease repetitive behavior in children with developmental disabilities.

The researchers identified two types of repetitive behavior:

• Non-functional behavior such as repetitively spinning the wheels on a toy car, and only showing interest in one topic
• Potentially functional behavior such as watching the same television show over and over

To intervene with the non-functional behavior, researchers gave the children an alternative behavior. For example, a child who flaps his or her hands was told to squeeze palms together as this motion cannot be completed at the same time as flapping.

For the potentially functional behavior, researchers used reinforcement to encourage a broader range of interests or use the interest in more appropriate ways. For example, a child who watched the same video over and over again would be praised for engaging in other activities or even just watching the video once at a scheduled time.

Researchers recruited five participants, ages 39- 65 months, who engaged in repetitive behaviors that adversely affected their family lives. Each child exhibited both kinds of repetitive behaviors, which could be provoked with particular stimuli. Over 12 sessions, therapists and parents worked with children to either teach and reinforce the alternative behaviors or reinforce choices not involving the object of repetitive behavior.

Each session began with a probe as the therapist interacted with the child and a second probe with the parents interacting with the child.

After collecting baseline data during two sessions, the therapist showed the parents how to intervene when a repetitive behavior was taking place by verbally, or physically if necessary, directing the child to engage in alternative behavior. Parents also directed children to play with or pay attention to an object that was not part of the repetitive behavior and offered praise for playing with and choosing these alternative activities. Parents continued practicing the intervention at home when repetitive behavior took place.

While this study was very small, three of the participants showed great improvements in the reduction of repetitive behavior. The children also showed greater engagement in alternative activities, which could point to an increase in flexible thinking. While this intervention needs to be replicated at a greater scale, this study suggests that parents and teachers may be able to use alternative behaviors and reinforcement to help decrease repetitive behaviors.

References

Boyd, Brian A., McDonough, Stephen G., Rupp, Betty, Khan, Faraaz, and James W. Bodfish. (2011). Effects of a Family-Implemented Treatment on the Repetitive Behaviors of Children with Autism. Journal of Autism and Developmental Disorders, 41(11), 1330-1341.

On November 11, Jerry Shook, the founder and CEO of the Behavior Analysis Certification Board (BACB), passed away. The impact Jerry had on the field of behavior analysis cannot be overstated. Unarguably, he was the primary force in making behavior analysis the professional discipline that it has become over the past several years.

Before Certification
When Jerry was in graduate school in the 1960s, the science of behavior was studied in isolated pockets of academics scattered around the country, in places such as the University of Kansas, Western Michigan University, Southern Illinois University, and a few others. Although we behaviorists saw the value of the science being applied to solving human problems, we were considered on the fringe of psychology and education that, for the most part, remained disconnected from a true scientific perspective.

Before certification, in the area of autism treatment, some therapists claimed to use behavior analytic technology. But in that time, there was no formal definition of what behavior analytic therapy was, or the qualifications one needed to call oneself a behavior analyst delivering behavioral therapy. There was no defined training program, or identified knowledge or skill sets that would have applied to all people claiming to do this therapy.

Simultaneously, there was increasing recognition of the power of behavior analysis to effectively treat persons with autism. Although consumers were becoming more interested in this therapeutic approach, parents and other consumers seeking professionals trained in applied behavior analysis had no source to guide them as to the acceptable criteria to use to judge whether someone could be considered competent in this field.

The Beginning of Certification
Jerry had the vision to realize the impact the science of human behavior and its application to human problems could have on treatment of children with autism and other developmental disabilities. Working in Florida, Jerry helped establish that state’s process for certifying behavior analysts. Using that experience, he began the national certification process, in which he promulgated the knowledge and skill competencies that would represent trained behavior analysts.    

The impact of the establishment of the BACB and formal certification in our field was, in a word, stunning. The number of universities and colleges offering training in behavior analysis began to increase. Service providers interested in learning behavior analysis now had a set of knowledge and skills which, when acquired, would present to the public that they had specialized training. Consumers, seeking professionals trained in behavior analysis, now had a set of standards, and a recognized certification, which would identify a professional as having the desired set of skills. The certification process moved forward just at the right time, with the escalating incidence of autism, and the explosion of demand for behavior analytic services.

The Evolution
Over the ensuing years, Jerry shaped the requirements for certification, systematically expanding the depth and breath of the training to increase its rigor. The number of hours of training expanded. Hour requirements for ethics training were established and then increased. Supervision hours were implemented and the number of required hours increased over the years. And the Guidelines for Responsible Conduct, an ethical code for behavior analysts, were adopted and disseminated.

The popularity of the certification in behavior analysis is such that over 10,000 individuals across the world have become certified as a board certified behavior analyst (BCBA) or board certified assistant behavior analyst (BCaBA). Over 190 colleges, universities, and other organizations offer the certification training across the world. Parents and other consumers have a definitive credential to seek when locating behavior analytic service providers. And behavior analytic services, one of the more effective therapeutic approaches to use with persons on the spectrum, have been made available on a scale barely imaginable a decade ago.

Jerry’s Legacy
Many behavior analysts strive to have an impact on their chosen profession. Some conduct research, extending the boundaries of what we know. Others make an impact by taking the research findings and principles and applying them to solve human problems. Jerry Shook took what we knew, codified the knowledge and skills of competent implementation of behavior analysis, and made it a legitimate and formalized professional practice. He took our field to a level few could dare dream. Through it all, Jerry remained true to his nature. A very personable man, he showed wit, intelligence, and a comfortable, casual style of interaction. His demeanor set standards for personal and professional conduct that we all should strive to emulate.

Due to Jerry’s efforts, behavior analysis went from a discipline studied by a few, to literally a world-wide movement focusing on the training of professionals in a discipline proven to be effective in improving the lives of thousands of individuals with and without disabilities. What he started will continue to help people and define our field for a very long time. He made a real difference.

The Schneider family lives on Long Island, N.Y., and was fortunate to find a running club for people with autism, Rolling Thunder. Today, the Schneider sons are celebrities in the running community, notes Robyn who is the coordinator of external and legislative coordinator at Eden II Programs, where the boys go to school. “They have been featured on the front page of the New York Times, Newsday, and the Southampton Press as well as other publications. Placing first or second in their age group is very common and our home is overflowing with the more than 80 trophies, plaques, and medals that adorn every room.” Jamie and Alex gained entry and ran in the 2011 Boston Marathon, where Alex finished in four hours and Jamie in six.

Their father, Allan Schneider, a semi-retired real estate broker, used to take them running on the beach and when they were about 13, they began easily surpassing him. “The very first day at Running Thunder, the coaches came to us and told us we must concentrate on their training, because they are very gifted. The boys always loved running and it’s become the focal point of their lives,” he says.

“Running has changed our family life dramatically. Running is the number one activity for the boys and for us as a family,” Robyn adds. She often runs or rides her bike with the boys. “This is so exhilarating for me, as I can share the experience with them.”

Robyn and Allan say that Alex and Jamie would not be able to maintain the training and running schedule they do without the help of their volunteer coaches. Alie relies on long-time coach Kevin McDermott and a newer coach, Stephen Dalton, while Jamie trains with his dad and, more recently, Katie Raab-Reed.

They have always been physically active and gifted athletes, Allan says. They began running in races and marathons when they were 15, depending on volunteer coaches to run with them for support and guidance. Jamie and Alex and their coaches will have completed three marathons, once they complete the upcoming Marine Corps Marathon in Washington, D.C., on October 30, which marks their first marathon for OAR. “We’re coming up on 100 competitive races that they have done,” Allan notes.

For Alie and Jamie, these workouts are not so much work as a lot of fun, says Robyn. “Jamie can run long distances with very little effort, usually singing or vocalizing along the way. He can easily run over six hours and does so with plenty of energy to spare! His happiest runs are when there is a pretty girl (preferably blond, with a swishing ponytail), running near him. He will quickly speed up to run beside her! Alie follows Kevin’s instructions precisely. And because running is such a potent reinforcer, he is on his very best behavior.”

Kindred Spirits
“Alie came in to Running Thunder with some talent,” says McDermott. “After a few months, he was running faster than many of our coaches. They were getting injured trying to stay with Alie. I was the fastest coach in the club at the time so we got paired up.”

“We are kindred spirits, both obsessed with running,” he explains. He is delighted by Alie’s willingness and enthusiasm. “He never balks at a workout, never wants to stop at halfway, even when I ask.” In fact, McDermott admits he sneaks in runs between his training sessions with Alex so that he can to stay up with or ahead of him.

McDermott had begun volunteering with Rolling Thunder not too long before the Schneiders brought Alex and Jamie. “The head coach is a character. He saw me at a few races. At one, he pointed at me and said you run with her. I ended up running with a young girl in a 5K race.” And he’s been training and volunteering with Rolling Thunder ever since.

A self-employed floor installer and former missionary, McDermott makes time to train with Alex three days a week. “Alie is not very verbal but he’s very smart and understands what I say. I talk to him during runs. He listens to me bellyache but he doesn’t do it. When I ask him how he feels, he says ‘I feel good.’”

Dalton, who is originally from Ireland and now works as a bartender in New York City, started coaching Alie with McDermott in 2010. He and his wife, Danielle, have been close friends with the Schneiders for years. “Danielle worked with the twins in their home from the time they were 8 years old until they were 16, providing ABA therapy and subsequently speech therapy for Alex and Jamie. Our families have remained close since then.” In fact, his children, Oscar, 4, and Amelia, 2, love coming to races to cheer on Alex and Jamie with homemade signs.

After he ran the Blazing Trails 4-Autism Four-Mile Race, which Robyn coordinates to raise money for the school Alex and Jamie attend, and the Hamptons Half Marathon in 2010, Robyn asked if Dalton would coach Alex and run the Boston Marathon with him. “Training for Boston with Alex and Kevin was such a rewarding experience,” Dalton explains.“Over that time, the three of us became such a cohesive unit that running and training together for the future seemed like a natural progression.”

Dalton explains that he and McDermott coordinate the training, with “a specific goal in mind, normally choosing our next race and then training with that race date and distance in mind. Whether it’s a three-hour plus long-distance run or intense one-milespeed workouts, Alex is a serious athlete almost always placing in the top three of his age group in the races he runs.

“The beginning of the race is the most challenging when running together. The crowded starting line is typically filled with runners focused on getting out in front and getting a good start to their race. This can be distracting for Alex and it is the coach’s job to make sure he does not get jostled around or trips. Other responsibilities in general when running with Alex include, keeping him aware of his surroundings, such as avoiding large water puddles, ice patches, snow, etc.; being mindful of crowding on the course; and reminding him to watch where he is going,” Dalton explains.

“Alex is a very talented runner with a seemingly unlimited resource of untapped potential,” he says. “It is exciting and challenging to run with him and to help him reach his full potential.”

Gifted with Athleticism
Allan and Raab-Reed are Jamie’s coaches. “I was in good shape, but I was never a runner, until a pivotal race that Jamie was in,” says Allan. “I was on the sidelines at the finish line and saw Jamie fall over the finish line, with his knees skinned up and bleeding. He had thrown himself to the ground during the race because something upset him. That’s when I decided I needed to get involved. He had great coaches but I felt as his parent, I could address the behavioral issues.”

Even then, it didn’t immediately get better, Allan notes. “Right off the bat, I had issues. He was still very erratic, but I learned how to sense and deflect any difficult behavior. Now, we’ve had three years of pretty well-managed behavior. He’s had to slow down a little so I could keep up with him, but he is also a happier runner. He still gets nervous sometimes, but generally he does just fine.” Allan has run a couple of marathons with Jamie since he first began coaching him.

Raab-Reed, who also runs with Jamie, was placed in the twins’ classroom in December 2005 at the Genesis school as a teacher’s assistant and shortly after began working in their home program as a behavior specialist. “It is an absolute pleasure to work with the boys and both Allan and Robyn are very welcoming to all of their teachers.”

“Not only is Jamie athletic,” notes Raab-Reed, “but he has a love for art and projects that involve intricate shapes and patterns. He sees colors differently than I do and I’m always amazed how he pairs colors together and just makes it work. Jamie also has a love for music and will sometimes break out into song and dance to express how happy it makes him. Working with him can bring a smile to your face in an instant.”

About a month and a half before the Boston Marathon, the Schneiders asked Raab-Reed to run with Jamie and Allan during the second half of the marathon. “I began training with Allan and Jamie the following weekend. The Schneider family had inspired me to take up running again after many years of absence to the sport so I was ecstatic to be a part of Jamie’s second marathon. I am so proud of these boys; running is hard work and their love for the sport shines through the second they start moving.”

Jamie’s needs determine the coaching methods, Allan says. “I’m not a coach I’m a parent who took up running. I throw in everything but the kitchen sink. Jamie’s behavior can be erratic so I make decisions as we go. For instance, if his behavior starts to become difficult, I will change our pace or shoot off on a different trail or start a conversation to get his attention onto something else.”

Raab-Reed follows Allan’s lead since he and Jamie have established a working routine. “I only get to join in on the weekends for the long runs so I am lucky to spend several hours running on the trails with them. Basically I feel out Jamie’s mood, sometimes he wants to be the leader and other times he’d rather run next to you. There’s been a few times when both have us have been pushing each other’s pace, making the other one work hard to keep up, and it almost turns into a game of tag. Jamie is definitely tuned into his body and knows when to turn down the heat for a walk break.”

Gifted with athleticism, running the Boston Marathon was a breeze for Jamie, Raab-Reed notes with a smile. “He sailed through the entire Boston Marathon as if it were only a 5k. He has an incredible amount of energy in his stride and when he hit those hills in Newton, he charged up them without breaking a sweat.”

On the Go
While it’s meant sacrifice for Allan and Robyn, overall, it’s been a great gift for the boys to have running to concentrate on. They are almost constantly on the go, no matter the weather, meaning that Allan or one of their volunteer coaches has to be ready to go with them. “We’ve can’t just sit them in front of the television. If they aren’t running, they are walking or biking in any weather under any conditions,” says Allan. The Schneiders set up a gym in their basement to give themselves and boys a place indoors to train. Even so, Allan notes, it’s a lot of work for him to coach Jamie and for his wife to manage their volunteer coaches and training schedule.

“We haven’t imposed any of this on them,” he notes, “They have such a love for it and we just feed that.” In fact, he says that he and Robyn would not be able to keep up with the boys’ love for physical activity if it weren’t for the volunteers who run with the boys. “So many people have helped us, the volunteers and other club members and runners. It’s become our social life.”

“It’s good for them and good for us and we’ve had incredible health benefits and the opportunity to get to know an incredible group of people who support the boys,” says Allan.

Kathryn Mederise Jantz, MSW, who has worked with the Asperger’s Association of New England, interviewed 35 adults with Asperger Syndrome ranging from 24 to 77 years old to determine to what extent they use support groups. All of the participants currently participated in support groups, wanted to participate in support groups, or had participated in support groups in the past. She interviewed each participant to determine what he or she hoped to learn or had learned from his or her participation and gave each participant the Autism-Spectrum Quotient questionnaire and UCLA Loneliness Scale.

Based on her analysis of the results, adults enrolled in support groups were more likely to be receiving mental health services outside of the group. The top reasons for attending or wanting to attend a support group were social skills and interaction, information and advice, structure, or they were encouraged to attend by someone else.

All participants in the survey received high scores on the loneliness scale, an indication of more feelings of loneliness, even those who were currently in support groups. This suggests that support groups alone do not address the issues of isolation, lack of friendships outside of family, and social skills that participants in the survey hoped support groups would address.

This survey shows that while support groups may exist for adults with Asperger Syndrome, they may not be providing the full range of support participants desire. More interventions need to be developed and researched to teach adults with autism social skills. Current studies of social skills curricula for young adults and adolescents could be adapted to address some of the issues participants in this study cited as motivation for joining a support group.

References

Jantz, Kathryn Mederise. (2011). Support for Adults With Asperger Syndrome. Focus on Autism and Other Developmental Disabilities, 26(2), 119-128.

Animals have long been used to provide unique services for individuals who need specialized assistance in some way. For example, Seeing Eye dogs are trained to provide assistance to persons with visual impairments to negotiate the physical environment. In addition to providing such basic services as security and protection, animals have been used to provide emotional and psychological comfort and support to people (e.g., Hall & Malpus, 2000). In fact, it has been experimentally shown that social interactions can increase simply by being in the presence of a dog (McNicholas & Collis, 2000).

The increasing incidence of autism spectrum disorders has resulted in an increase in therapies designed to treat this condition. A recent development has been the training of dogs to specialize in working with persons with autism spectrum disorders. Proponents of “autism dogs” assert that these dogs can support the unique challenges of persons on the spectrum. This article reviews the current knowledge and research in this area.

How “Autism Dogs” Are Used
Trained to assist a person with autism, an “autism dog” is usually connected physically to the person with ropes or other forms of tethers. There are two primary objectives for such dogs.

First and foremost, they are considered “service” dogs. According to National Service Dogs (2011), the mission of these animals is to increase the safety of the person with autism. For example, such a dog may lower the likelihood of the person bolting or crossing a busy street, because it is physically connected to the person with autism (Autism Service Dogs, 2011). The dogs are trained to follow commands from parents, stop at doorways, and resist the child moving away by using its weight to slow or stop the child (e.g., Burrows, Adams, & Millman, 2008a; Burrows, Adams, & Spiers, 2008b).

Dogs also have been known to alert parents of potentially dangerous situations at night (e.g., child waking up unhappy or getting out of bed and walking around). This can result in not only the person with autism remaining safe from harm, but also parents and other family members being calmer, happier, and more relaxed knowing that the safety issue is less of a concern. One difference between autism service dogs and other service dogs is that typically, service dogs are trained to bond primarily with the person whom the dog will be helping. However, autism service dogs are trained to primarily bond with and take instructions from the parent(s), but trained to work with the person with autism (Burrows, et al., 2008a).

Some proponents assert that such dogs do more than enhance physical safety. Some  (e.g., Autism Service Dogs of America, 2011) argue that the dogs provide a “calming presence” that  “can minimize and often eliminate emotional outbursts.” Some advocates believe that such dogs can provide “…. a focus through which the child can interact with other children. This helps increase the opportunity for the child to develop social and language skills.” Burrows, et al. (2008a) believe that dogs can positively influence children with autism in the areas of arousal and sensory stimulation, improving concerns in these areas. In addition, dogs can function as a “transitional object,” allowing the child with autism to first bond with the dog, an easier creature with which to do so, and this may eventually increase bonding with humans.

Obtaining a Service Dog
To obtain a dog, parents must apply to one of the organizations that supply these animals (e.g., 4 Paws for Ability; Autism Service Dogs of America; National Service Dogs). The cost is approximately $20,000. There appears to be no exclusionary criteria for either the diagnosis of autism (autism, Asperger Syndrome, PDD – NOS) or the age. Four Paws for Ability (http://www.4pawsforability.org) specifically states that age or severity of disability does not exclude one from getting a dog. On the website for the Autism Service Dogs for America (http://autismservicedogs.com), the application does not focus much on the functioning level of the target child. Several questions are asked about the type of problem and the behaviors exhibited by the person who will receive the dog (e.g., oversensitivity to sound, self-injurious behavior, lack of social reciprocity). No statement can be found as to exclusionary criteria.

To train a dog to perform such service functions, there is an intense and lengthy period of instruction. Once selected, a trainer and family work together to habituate the dog to the family and child with autism, train the parents on the commands that will be given to the dog, and assimilate the dog into the family routine.

The popularity of the supports these dogs provide appears to be increasing. Several of the agencies claim to have a waiting list. For example, National Service Dogs is constructing a new facility for training and education, and eventually will be able to place 40 dogs annually and will be able to expand outside Canada. Since 1996, this one organization has placed over 170 dogs.

Evidence of Effectiveness
As with many strategies and treatments when it comes to autism therapy, one must ask whether or not there is evidence of effectiveness of autism dogs providing the services advocates claim they provide. The literature describes two primary positive outcomes:

• Enhanced physical safety and security
• Enhanced social, learning, and emotional improvements

When reviewing the literature for research on the effect of autism dogs, there are many testimonials, some case studies, and only a few actual studies incorporating anything resembling a form of research design. Most of the research done on this topic consists of qualitative research, involving interviewing as the means for collecting data. Thus, the quality and validity of the information collected on ascertaining the effects of the autism dogs must be viewed cautiously.

Nevertheless, most of the outcome studies support the notion that these dogs do provide increased physical safety and security. For example, Burrows and Adams (2005) and Burrows, Adams, and Millman (2008) reported that parents consistently claimed that the dogs prevented children from bolting and running away. Parents relaxed more during bedtime knowing that the dog would alert them should the child with autism leave the bed or exhibit some other potentially dangerous behavior. Because of the dog’s ability to physically prevent the child with autism from behaving in a dangerous way, parents felt more in control and calmer. Most of the dogs accepted the jackets in which they were placed and followed commands well. Parents reported immediate satisfaction and reduction in concerns about safety issues.

The research is less convincing when attempting to definitively ascertain whether the presence of the autism dog results in the learning of new skills, the improvement of emotional status, increased socialization, and fewer behavioral concerns. Some parents noticed new skill development. For example, after being with their dogs for a period of time, some children began regulating walking pace and developing improved motor skills and control. Burrows, et al. (2008a) found that some of their participants began learning dog-care tasks (e.g., feeding the dog by taking lid off food container; putting food in bowl; putting bowl on floor; commanding dog to eat).

Additionally, motor skills improved in some children who learned to pet the dog. The authors also found that, according to parents, the children exhibited decreased anxiety, were calmer, and engaged in fewer tantrums and other disruptive behaviors. Some parents even reported improved bedtime routines, and that the children “just seemed happier.”

Using a more sophisticated design, Farnum and Martin (2002) investigated the impact of such dogs on the mood and social abilities of children with autism. The researchers systematically varied three different conditions consisting of a simple toy, stuffed dog, and real dog. They found that the participants demonstrated greater positive mood and “focus” on the environment when in the presence of the autism dog. However, this study has not been replicated and there are some methodological issues that limit the validity and generalization of the conclusions.

Effects on the Dogs
Interestingly, Burrows, et al. (2008b) also studied the impact of several variables on the dogs themselves. The authors conducted a series of interviews with members of 11 families who used dogs for their persons with autism. Parents were interviewed at three different time periods – when they were receiving training with their new dog, and every third month for 6 months.

The authors reported that generally speaking, the dogs were loved and bonded well with all members of the family. But the dogs were placed under significant stress, given the peculiarities of being with a child with autism. For example, some dogs could not sleep for long periods of time, if a child with autism went without sleep. Some dogs spent long hours in their jackets and inhibited urination and defecation if accompanying the child to school. Some children engaged in aggression towards the dogs, causing dogs to startle and move away from the child. The authors reported that some dogs eventually learned the cues that the child might suddenly display inappropriate behavior, or learned to discriminate between cries of needing something and cries that would signal aggression or tantrum.

The authors also discussed their results in terms of the impact of the dogs on social interactions. Generally speaking, dogs bounded primarily with one or both parents, and to a lesser extent, the child with autism (also supported by Burrows, et al. 2008a). Only four of the children with autism showed interest in the dog, defined as petting or initiating any sort of social approach. Dogs preferred interactions with parents and followed their commands. Generally, the child with autism provided less attention and social contact with the dog than did other family members.

Conclusions
Autism service dogs seem to provide a measure of safety to a child with autism. When tethered to a child, such dogs can prevent or minimize the child getting injured or lost. Such dogs also seem to be able to provide monitoring during the evening allowing parents to be more confident that their child will remain safe and that the dog would warn the parents should a need arise.

The evidence is less compelling when considering whether the autism dogs themselves are the reason for increased learning in the areas of motor, emotion, social, or adaptive behavior areas. They do not have any special capacity or “sense” of a special emotional connection with persons with autism. Rather, dogs can be the medium in which the child practices skills, such as learning to feed the dog. However, the reason for learning is most likely the repeated practice instead of any special characteristic of the animal.

In addition, the other areas of improvement noted in these qualitative studies – such as the children being happier, engaging more in positive social interactions, and displaying reduced number of tantrums – cannot be confidently believed, due to the data collection methodology and lack of reliability and validity of those data.

Autism dogs seem to have a role to play for the physical security and safety of children with autism. And that reason alone may be powerful enough to consider using one if it can be financially afforded. The impact of the dog on learning and other behavior remains to be determined in a more rigorous manner, and until that time, the use of autism dogs should be limited to enhancing safety of the child.

References

Autism Service Dogs (2011). Retrieved October 18, 2011. http://autismservicedogsofamerica.com/

Burrows, K. E., & Adams, C. L. (2005). Evaluating the benefits of service dogs for children with autism spectrum disorders. Retrieved on October 21, 2001 at www.cnaf.net/documents/NationalServiceDogsStudy.pdf

Burrows, K. E., Adams, C. L., & Millman, S. T. (2008a). Factors affecting behavior and welfare of service dogs for children with autism spectrum disorder. Journal of Applied Animal Welfare Science, 11, 42-62.

Burrows, K. E., Adams, C. L., & Spiers, J. (2008b). Sentinels of safety: Service dogs ensure safety and enhance freedom and well-being for families with autistic children. Qualitative Health Research, 18(12), 1642-1649.

Hall, P. L., & Malpus, Z. (2000). Pets as therapy: Effects on social interaction in long-stay psychiatry. British Journal of Nursing, 9(21), 2220-2225.

McNicholas, J. & Collis, G. M. (2000). Dogs as catalysts for social interactions: Robustness of the effect. British Journal of Psychology, 91, 61-70.

On September 4, Marie Kissil, 30, ran her first half marathon for OAR, at the Dodge Rock ‘n’ Roll Virginia Beach Half Marathon, raising more than $2,100 in the process. A special education teacher who lives in Chesapeake, Va., Kissil works for a regional program called Southeastern Cooperative Educational Programs (SECEP) and teaches children with autism in an elementary school in Virginia Beach. She tells us why she was determined to run and raise money:

“When I was researching races, I knew that I wanted to find one that would allow me to raise money for autism. It has become so widespread and affects so many kids and their families. I did not even consider another cause. I knew I wanted to run for autism. OAR made the fundraising process very simple and I love how it uses the money it raises.”

Inspiring. Fearless. Confident. Wonderful.
“I grew up with a sister, Meagan, 28, who was diagnosed with autism. She is incredible and has inspired me to become a special education teacher. She lives with my parents in Arizona where they retired. I think what is most inspiring about her is how positive she always is. She grew up with even simple things being a lot harder for her. She was teased and called every name in the book. Despite all that, she always has a smile on her face and is the sweetest person to everyone she knows.

“What I respect about her the most is how fearless she is. She does not care what people think of her. She is proud of who she is and is confident in everything she does. I think that is incredible when you think about all she has had to go through growing up.

“As people get older, they often lose that purity and honesty and sense of wonder that children have. That is not true for my sister and every time I spend time with her, she grounds me. She reminds me what is important in life. I start to see the world with a sense of wonder again. I have learned more from her than anyone else in my life. She has taught me to try to be the best person I can every day and to appreciate everything I have been given in life.

“My parents sacrificed a lot to give her the best education and support at home. They did an amazing job at keeping my life as normal as possible. I can’t ever thank them enough for that. I know it was not always easy for them. When I was too young to really understand what was going on with my sister, I admit that I would get frustrated with her and the situation. Why did she have to be different? Why did people always have to look at us when we were in public? It wasn’t until I grew up more that I realized how special she was. We got much closer as siblings as I got into middle school and high school. My friends all knew her and I got to know all my sister’s friends.”

Taking on a Challenge. And a Purpose.
“I have always respected people who run longer distances. It has always been something I wanted to try. I actually want to work my way up to running a full marathon. When I signed up for the half marathon, I decided that I would make it even more special by running with a purpose.

“The only running I did before this half marathon was for soccer when I still played and the occasional run for a workout. I had never run over five miles. I found a simple training plan online and went for it. Now, I really enjoy running and especially like the long run days on the training schedule. I can see why people get addicted to it.

“I started training almost exactly two months before the race. All the people that donated kept me motivated. I kept thinking to myself that I better keep training and do okay on this half marathon because all these great people gave money to my cause. There was no way I could tell them I didn’t finish. I trained on my own, based on the training program I found. I just slowly built my miles up over the two months. I have a couple friends that have gotten into running recently as well. We have signed up for two future races together already.

“The half marathon was fantastic. A few friends came out to watch and I met my goal time. I talked to a few people ahead of time about what races are like. Everyone said they are so motivating because of the people cheering and the other runners. They could not have been more right. I can’t wait to do more running events.”

The Family Gets in on the Fun(draising).
“I started off by just e-mailing friends and family. I also made several posts on Facebook. My mom was really the one that pushed along the fundraising. She forwarded my e-mail to more family members and all of our family friends. She told everyone that came over to their house. Once she did all that, the fundraising really took off. She could not have supported me more. It really ended up being a family effort. Even my sister donated! People have been so great about supporting this cause that means so much to my family.”

A group of researchers in France hypothesized that one reason imitation is difficult for individuals with autism, is the speed of biological movement. In Slowing Down the Presentation of Facial and Body Movements Enhances Imitation Performance in Children with Severe Autism, these researchers tested their hypothesis. They recruited 19 children with autism, 37 typically developing children, and 17 children with Down syndrome. Children with Down syndrome were included in the study to test whether the results applied to other disability categories rather than just autism. The children were paired based on verbal and non-verbal mental age.

A model was taped performing a series of movements at regular speed. The movements were then slowed down. Children watched the both the normal speed and slowed down videos and were asked to imitate the final motion. Researchers scored each child on accuracy of imitation.

The data regarding children with autism was analyzed by groups of IQs and severity as measured by the Childhood Autism Rating Scale (CARS). Children with high IQs and low CARS scores performed well in imitation of the movements at regular speeds. Children with lower IQs or high CARS scores performed significantly better at imitating movements when the video model was slowed down. Most of the typically developing children and children with Down syndrome, scored high on imitation skills with movement at regular speeds. The children in this group who did not score well showed no improvement in imitation when assessed with the slowed down video model. The researchers believe this supports the specific utility of slowing down motions for imitation in children with autism.

Children significantly affected by autism show improved imitation skill with slowed down modeling. Teachers and parents can easily incorporate this into play. When playing imitative games, slow down movements. Future research will examine whether the imitation of slowed down movements leads to greater gains in communication and social skills.

Reference

Laine, France, Rauzy, Stephanie, Tardif, Carole, and Bruno Gepner (2011). Slowing Down the Presentation of Facial and Body Movements Enhances Imitation Performance in Children with Severe Autism. Journal of Autism and Developmental Disorders. 41: 983-996.

Penelope Gelwicks is a staff writer for Rethink Autism and also coordinates family support. Her brother was diagnosed with autism at age 3 and was homeschooled by her family.

In many school and early intervention systems, staff expertise and funding cannot keep up with the rising need for autism services. At home, parents are also looking for the best tools to supplement their child’s school services or in-home therapy. Technology has helped to supply those needs in ways that would not have been anticipated even a few years ago. We have gone from chalkboards to PowerPoint, from notebooks to iPads.

For students with autism, is there a difference between traditional service delivery models versus treatment tools delivered through technology, or, more specifically, online? Or is online learning the solution that will level the playing field for an exploding autism population in need of services?

Whether considering online Applied Behavior Analysis (ABA) or popular “autism apps,” online treatment tools for parents and professionals are an attractive solution, but sufficient criteria must be established to evaluate the growing list of options.

What should I consider?
Start with the same criteria you would use for any treatment option, online or off.

The first question to ask is if the intervention method is backed by scientific research. Read up on the intervention, as seen in both traditional settings (i.e., delivered in-person by a therapist) and within an online delivery setting. Also, determine if peer-reviewed studies have validated the effectiveness of the intervention.

Next, since research shows that early and intensive intervention is the key to success for children with autism, ask if the program is intensive enough to bring real results.

Research also suggests that parental involvement in treatment can help the child make more significant strides. Parents should ask whether the treatment puts them in an active role or a passive one. If you are looking at a treatment option that targets one set of skills, like speech, for example, make sure you are prepared to find other interventions for other areas of concern (e.g., social skills, activities of daily living, language development). It may also be useful to show the online program to a therapist or teacher who knows your child well and can offer insight. Cost, of course, will be a factor in narrowing down your choices.

Not all online programs for autism treatment are created equal.
Narrow the field by looking at whom the product is geared toward: parents, professionals, or both. Even more importantly, find out who is behind the product, vouching for its effectiveness and clinical integrity. Many online treatment providers collaborate with scientists and experts in the field to develop their content. If the online treatment product does not clearly demonstrate that the company offering it is receiving clinical oversight by well-established professionals, consider this a red flag.

No treatment, online or otherwise, should be implemented without professional support. Thus, the quality of customer care and support should factor in to your decision. Find out what types of clinical and technical support is provided and how easy it is to access. You want to have sufficient guidance to customize your online treatment to the specific needs of each student with autism and have the option to reach out for help. Also, determine if the company has clinicians who are available to train you on the program and whether additional clinical support options are available if needed. If clinical support and training are not inclusive in the online program, consider whether you will have the time and resources to develop your own support system.

To review, consider these factors when you evaluate online treatments and if they will help you:

• The scientific evidence for the treatment
• The experts behind the product
• The kind of support available to users

The best online autism treatment products will offer already-proven intervention strategies in a scalable and cost-effective online format, and ongoing clinical and technical support for their users from experienced professionals.

For more information on selecting research-based autism treatment, please visit: http://www.rethinkautism.com/AboutAutism/TreatmentOptions/

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Rethink Autism makes research-based educational treatment tools accessible, affordable, and easy to use for parents and professionals around the world. Our dynamic Web-based platform includes a comprehensive curriculum with over 1,200 video-based exercises, staff/parent training modules, and automated data tracking – all developed by leaders in the field of autism. We also offer a range of technology-enabled remote service options, ranging from short-term consultation to ongoing systems-change initiatives supported by our team of professional educators and clinicians. Visit our home page to sign up for free weekly video tips: www.rethinkautism.com

Wendy Swenson is the mother of young adults and is proud to say she is now a grandmother too. She is currently enjoying life in Virginia with her son, Tim. She works as a school social worker and has a private practice as a licensed clinical social worker. You can reach her through her Web site: http://www.the5needs.comor e-mail: the5needs@gmail.com. She would enjoy hearing from you.

As a toddler, our adopted son, Tim, had been through a great deal before he came to us, including a traumatic delivery, several trips to the hospital, two foster homes, therapeutic outpatient treatment, and even special clinics.

After multiple visits to the doctor and when Tim was just age three, his doctor said, “Look, you have done your best, the boy will not walk, he will not talk, he will not feed himself; he will not be toilet trained and you need get a grip on this and get him placed in this treatment facility and get on with your life. You have two girls who need you; you need to get out of denial and move on. Take this number, and call to get the boy into that facility.”

Shocked, I looked at him and said, “What? What are you talking about?” Walking out of the doctor’s office in total disbelief, I hugged Tim closely. He would not go to any facility, not at that point for sure. My heart was torn, heavy, hurting, confused and I was weary, but determined. We would do our best and go from there. When we arrived home, my two daughters greeted Tim and me as always with smiles and joy to see their younger brother. Little did they know the grim outlook the doctor had just given to me or the ache and fear in my heart.

Tim began receiving services through the public school system in New Orleans; he had good teachers, received speech therapy and other related services. Tim learned to walk, talk, eat, take care of all his personal hygiene needs, and surprised people all the time by the things he could do. At that time, Tim had a diagnosis of Pervasive Development Disorder (PDD). The autism diagnosis didn’t come until a few years later.

Autism was never far from our minds. We lived it. We constantly dealt with all the emotional battles that come with the diagnosis of autism and the realities this brings to a family, including the pain of seeing your child work so hard and struggle to understand the world. I cried many tears, silent and unseen, and also delighted in seeing the smallest steps forward, like the day Tim could finally take a bite of a sandwich. The joy such a little thing brought and the hope it stirred in my heart was wonderful.

Learning and Growing

Now, at nearly 30 years of age, Tim is still amazing us as he continues learning and growing. He is still a joy and delight to all of us.

Today, Tim and I live in Culpeper, Virginia. The supports we found here have helped Tim achieve things no one thought possible. He has two part-time jobs and has excellent reviews from his employers. Tim has taken some classes at community college; with support and accommodations, he excelled in each. We enjoy time together doing a variety of things and “just doing nothing” at home. Going out to do things with crowds is difficult, but we enjoy having family and friends come over and share life.

Tim knows what works for him and what does not. He is willing and able to stretch himself as needed, as is evident by the facts that he is employed, rides the bus, walks around, and maintains an incredible workout schedule. Tim has learned that working out helps him with his stress and anxiety; he will often run five to 12 miles on the treadmill.

As a parent, I am extremely proud of Tim. I admire him. He is my inspiration in many ways. Challenges? Sure! Pain? Sure! Disappointments? Sure! Tough days and stress…absolutely! But who does not have all that in some way to some degree? As a professional, I am grateful for all the services available here and enjoy helping others find their way and offer support on their journey. Life is indeed an adventure, and when we have special needs the adventure, turns into a different type of journey, one that includes many discoveries along the way.

Let me encourage you to hope, believe, and love. Accept what is and yet seek what can be.

Understand all you can about the differences you see in your child, acknowledge what is real, be honest, and let yourself hurt and heal.

There is always hope and things may be better than anyone can tell you now. We all are different.

We all need a hand. Professionals do their very best but they are not always right, any more than anyone else is. Use the wisdom professionals may offer, but realize they could be wrong too and you may be pleasantly surprised one day when your child outshines the limits and boundaries ascribed to him or her. Enjoy the good!

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In February, she signed up to run the Chicago Marathon for OAR this coming October. “I knew I would need to raise money so a friend who has done this before told me I should look on the Internet.” Companies donate in-kind products and services for individuals who are fundraising. Easley dove in and signed up at a number of sites and then promptly forgot all about it.

Up, Up and Away
A couple of months later, an e-mail from Air Tran dropped into her mailbox to tell her that her application was accepted and the company would like to send her two round-trip tickets with a maximum value of $1,000.

Hmm, she thought, these would make great raffle prizes. But she didn’t want to raffle off just the tickets so she sat down with her husband and made a list of businesses in the town where they live, Springfield, Ill. Easley set off to ask each one for donations. “Most places were happy to give me something. A few said I had to write to company headquarters or talk to someone else.”

She ended up with a variety of donated items for the raffle, including homemade items donated by friends and family. She and her supporters began selling raffle tickets to everyone they knew.

As she considered her trove of raffle items, Easley decided that throwing a party would be a perfect way to end the raffle and raise even more money. She posted the party date, July 30, and location on various community calendars and the free community newspaper and anywhere else she could think of that was free. She lined up a local bar to have the party in, another donation thanks to a family connection. She asked her local grocery store, Walmart, and Target for gift cards and used those for food and party supplies.

A local TV station had her on the morning news to promote the party. That evening, about 25 people showed up and many of them bought raffle tickets. Others, says Easley happily, just gave her a contribution. At the end of the evening, she had raised $800, putting out exactly $0.40 of her own money, in addition to time and effort. And she wouldn’t have spent that much but she forgot to calculate tax on a meat tray for the party.

Her total fundraising goal is $2,000 and she’s raised $974 so far.

A Girl Named Abby
As with many of OAR’s runners, Easley had a very personal reason to run: her four-year-old daughter, Abby, who will turn 5 in October. “She’s really come into her own in the past year. She’s curious about everything. She loves being outside. If we go for a walk, she looks for leaves and when she finds one she likes, she picks it up and holds it. She also loves to go swimming and she is very interested in music.” Diagnosed with autism in 2010, Abby has been in early intervention programs since she was 2, notes Easley, adding that the early intervention has made a big difference. “She’s grown so much and takes direction so well.”

Easley started running because she wanted to get back in shape, setting a goal two years ago to run a marathon by the time she was 30. “I figured two years would give me time to get in good enough shape for the marathon.” Soon after Abby was diagnosed, Easley found the Chicago Marathon. “I knew then that I would run for an organization that is connected to autism. I saw OAR on the list and when I read about it, it seemed perfect.”

Easley believes that there is nothing special about her decision to run a marathon or her fundraising efforts. “If I can do it, you can do it.” She didn’t know anything about running a marathon, wasn’t connected to OAR, and didn’t really know what her fundraising plan was going to be. “But once I decided to run a marathon, I made a plan and it’s gotten me this far. When I’m 70, I’ll be able to say I ran the Chicago Marathon.”

For families who have children with autism, though, a trip to the beach is often out of reach. Their child may not be able to handle the stimulation. Mom or Dad may not want their child to be gawked at. Or it may just be too much to try to do when a child has special needs.

That’s why Surfers For Autism, based in South Florida, is much more than its name implies. Beyond its core mission of providing children and young adults with a surfing lesson they will never forget, the organization offers a day of respite at the beach for thousands of families in Florida (and, more recently, Georgia). “We throw a huge beach party,” says Dave Rossman, director of communications. “There’s live music, face painting, games, and a host of other activities.”

 It’s perfect in many ways, he points out, because when families attend a Surfers For Autism event, they are with other families who face the same challenges and issues they do. “No one stares. Everyone understands why your child is doing what he’s doing. The families get to share stories with each other, build lasting relationships, and enjoy themselves while they’re here,” he explains.

Surfers For Autism President and Chief Operating Officer, Don Ryan, goes to the site of an event a few weeks before it happens and recruits not only volunteers and businesses to provide in-kind donations and services, he also scouts out resources for families with autism. Surfers For Autism provides an area where they can set up tables and provide information to the attending families.

Beyond the Beach Party
The heart of the organization’s activities, though, are the children and young adults with autism. On the day of the event, up to 200 kids and young adults are signed up for classes, held at staggered times. Volunteers with experience working with kids with autism stand at the edge of the beach to push the kids on their surfboards out into the water. An experienced surfer then helps the child to learn to stand and balance on the board or to lie on the board if standing isn’t possible and oversees him until he’s headed safely back to shore. A third set of volunteers help the kids out of the water.

“We make sure that the kids go into the water feeling safe,” says Rossman, which is why the volunteers at that stage of the lesson are experienced at working with kids with autism. But, he adds, “we also let siblings volunteer to push the kids out into the water. So much attention is given to the child with autism, and sometimes siblings in families with a special needs child feel slightly overlooked, so being able to do this is unbelievably cool for a lot of the siblings who come to our events,” he notes.

Surfers For Autism will take kids as young as four and see young adults with autism as old as 25 or 30 coming to events. “What we see is that the kids and young adults who participate gain a feeling of autonomy and independence. Maybe they are the first people in their families to surf or maybe they have never done anything on their own.”

“You can see some kids standing up on the surfboards and looking around for a minute, as if they can’t believe mom, dad, or a therapist isn’t right next to them. And some kids come running up after, yelling, ‘I’m a surfer,’ and they haven’t talked for 24 months before that. We have heard that kids ask to go surfing after a day with us,” Rossman relates.

Ryan finds his volunteers in his scouting trips, going to surf shops for experienced surfers and to other places to find a range of adults and young people to staff the event.

Since it coordinated its first event in May 2008, the organization has sponsored 17 events, 10 in this surfing season, including its first event outside of Florida, in Tybee Island, Ga. Rossman estimates that between 3,000 and 3,500 kids and young adults and their families have taken part.

Total Transformation
Surfers For Autism has plans to expand, says Rossman. “We are actively expanding into Georgia and hope to move out to other states, and even other countries. We’d like to reach every child on the spectrum.”

Surfers For Autism isn’t just about surfing though. The organization has raised over $100,000 since its inception, and the funds go towards covering the cost of beach events. After the season, any funds left over are distributed to organizations that fund research and advocacy. The organization raises money through raffles and donations at each of its events and it also holds concerts, comedy club events, and other fundraisers during the off-season.

The organization began at a surf club, where Ryan is a member, when a member talked about his brother with autism. Today, Surfers For Autism is staffed by Ryan, his wife, Kim, and Rossman, supported and led by a board, and kept going by several rafts of volunteers.

“It’s a total transformation for many of our volunteers as they see the impact this has on families,” observes Rossman. “You know how self-absorbed a lot of teenagers can be? When they come to help us, it just turns them around. One of our volunteers canceled her Sweet 16 party to be at one of our events.”

Learn more about Surfers For Autism here.

Dr. Steiner studied three families of young children taking part in a parent education program. The parents received the same content instruction, but the instructor changed her approach to speaking about the child depending on the session. In the first approach, the instructor spoke positively about the child’s strengths. In the second, the instructor phrased comments about the child more negatively or focused on skill deficits. Study participants received both types of instruction.

After receiving strength-based instruction, parents made more positive statements regarding their children, showed more physical affection, and had a happier general affect. When the instructor made more negative comments focusing on deficits, parents made more negative statements, showed less physical affections, and had a less happy general affect.

While this study did not make any conclusions regarding children’s progress based on instructor approach, its implication is clear. Happier, more positive parents are more receptive to the advice of professionals and take a more positive approach to their children when dealt with in a factual but upbeat manner. Other studies have shown parents with a positive approach to children with disabilities are more involved and active with interventions.

For professionals, the take away from the study is to remember that how they speak about children to parents can have significant consequences. Therapists and teachers often talk about positive behavior supports and using positive behavior during therapy or school, but this mindset also needs to extend to parent education and discussing children with their parents.

Reference

Steiner, Amanda Mossman. (2010). A Strength-Based Approach to Parent Education for Children With Autism. Journal of Positive Behavior Interventions. 13(3). 178-190.

When students with autism exhibit undesirable behaviors or act out in ways that are not acceptable, most schools have processes for addressing situations that are serious on their face or have not resolved within the context of standard classroom practices. As part of such processes, teachers or others at the school may be asked to write a functional behavior assessment (FBA). FBAs are being included more and more in IEPs.

If you haven’t written one before, the prospect of doing so can be a little intimidating. And, if you aren’t familiar with what an FBA is and what it is intended to do, you’ll have a difficult time contributing to the process effectively. Whether you are a teacher, supporting team member, or parent, these 10 steps can help:

1. A functional behavior assessment is just what the title says.

• Functional: An FBA is based on the “function” of the behavior. The function is the answer to “why is the student behaving this way?” Everything that we do has a function. Everything we do has a purpose. If you scratch an itch on your leg, it is to make that painful feeling go away. When you go to work, you are expecting to get paid.
• Behavior: It is also important to discuss what a behavior is exactly. A behavior must be something you can clearly define in a way that another person knows exactly what you are talking about.
• Assessment: To assess behavior, you must have data that can be used later to see if the intervention is working. Data can be gathered in many different ways depending on the type of behavior and frequency of the behavior. See step 3 below.

2. Define the undesirable behavior in clear and descriptive terms.
Let’s say that a student hits. Does that mean he slaps your arm or does it mean he punches you in the face? Those are two very different behaviors that could both be categorized as hitting. It is important to clearly define the behavior you are witnessing to ensure that all parties referring to the FBA know exactly what is being described.

3. Start with data to determine the function.
The best way to study behavior is within the context of a controlled environment in which one changes the variables individually over time. A classroom is not a controlled environment in that context and the antecedents of the behavior and the behavior itself are in the past. This leads us to the descriptive assessment which helps reconstruct the behavior in question and the factors (variables) surrounding it. In order to begin a descriptive assessment, you must first gather information. I recommend getting your data from at least two sources.

First, you can use the Functional Analysis Screening Tool (FAST). Google it. Copy the form, and give it to each person who works with the child. Then compile the results. It’s a quick and easy questionnaire that gives a lot of information about possible functions of the behavior.

The second method for obtaining descriptive data is to complete an ABC (antecedent, behavior, consequence) chart. These are very easy to create or you can download a chart from the Internet. An ABC chart records the antecedent (what happens right before the behavior). It also states what the behavior looks like in detail (i.e. hitting and kicking instead of “tantrum”). The “C” in ABC stands for consequence — what happens directly after the behavior. For example, if a child hits you and you yell at them, the consequence was yelling. If a person screams at recess and his or her classmates walk away from them, the consequence is other people leaving.

By looking at and combining the data from these and other sources, one can categorize various antecedents and consequences in order to determine the possible function. For example, you might realize that every time the child is asked to do work, he rips paper. Or, if a child is having a tantrum, his mom stops doing her chores and comes to hug and comfort the child. Possibly, the child is using the tantrum to get that hug.

4. Determine the function of the behavior
Next, you need to use the information you found when gathering data to make a hypothesis about the function of the behavior. Typically, functions fit into one of the four following categories:

• Attention-seeking behaviors: These behaviors have a goal of getting another person’s attention. A baby cries to get his parent’s attention. A colleague says, “Excuse me, I had a few questions for you.” Your 5-year-old says, “Look at me!” A child with autism may hit you repeatedly until you stop what you are doing to look at her.
• Escape/avoidance: Behaviors in this category have a goal of getting rid of something that is undesirable. A student may rip up a paper in hopes that the homework will not need to be completed. A student may run away from recess to avoid a bully. A student with autism may cover his ears to avoid a loud sound.
• Access to an object: When trying to access an object, there are many ways one might try to communicate. A person might order from a menu to get access to the dish he or she wants. A younger child might point at the TV and say “Barney.” A person with a picture exchange communication system might hand someone a picture of a snack.
• Automatic: The function behind behaviors in this category is hard to find, as we cannot see the benefit from the outside. When something inside our body is uncomfortable, we do what we can to fix it. We scratch an itch. We bite our fingernails. We blow our nose. People with autism have other behaviors we may see such as rocking, flapping hands, or bouncing on a therapy ball. All of these activities may give the person an automatic reinforcement by making their bodies more comfortable.

5. Match the function with your intervention
It is very important that you match the intervention with the function of the behavior. For instance, if a student is getting out of her seat and screaming at the top of her lungs, the teacher might think that a good consequence (response) would be a time out to allow the student to calm down and minimize disruption to the class. However, after collecting data, the teacher might realize that the screaming only happens after the student is asked to do work. Therefore, a possible function would be to get out of the work.

If a function of a behavior is to make the work go away, and the student gets sent to time out, then screaming worked. The student got out of my work just like she wanted to. If the consequence decided upon doesn’t match the function, then the behavior will not only most likely not decrease, but there is a chance that the undesirable behavior will actually increase. To address this, move on to Step 6.

6. Teach a replacement behavior
When looking to decrease a problem behavior, it is vital to teach a replacement behavior, meaning what you want the child to do instead. For example, let’s say that a child runs out of the classroom and down the hall every time he needs to use the bathroom. This is a problem because the student didn’t ask for permission and you are concerned about where he is going.

If you stop the child from running out of the room without teaching a replacement behavior, the child might start going to the bathroom in his pants again.

If you want him to ask to use the bathroom, it must be taught. Maybe the child can verbally say “bathroom,” or use a sign to tell you bathroom or maybe a picture exchange.

7. Explain FBA procedures to all involved parties to keep consistency.
Consistency is so important. If everyone in the student’s life understands the plan and works together, the plan will be able to affect the behavior more quickly.

8. Expect an extinction burst.
One aspect of working to decrease a behavior is an “extinction burst.” This means that the behavior may actually get worse before it gets better. Let’s start with a child who cries to get Mom’s attention. If Mom decides to ignore the behavior, the child will cry louder. In the child’s mind, crying always works, so if she cries a little louder, that will work. If that still doesn’t work, the child may progress to lying on the floor and kicking while crying….It goes on and on until Mom responds.

When Mom adopts a new strategy to change the child’s expectations, the child will keep trying the old behavior, and maybe even worse behaviors, to see if anything else will work to get what she wants. This extinction burst does not mean that the plan is not working. Stay consistent, and give the intervention time to produce the desired behavior.

9. Gather data.
Analyzing the data is the only way to judge if the plan is working or not. Especially with problem behaviors, it is hard to just “remember” if it is getting better. This is not the time for subjective analysis. Make sure you record the data as soon as possible so it’s as accurate as possible.

10. Review data and adjust as necessary. It is a fluid document.
An FBA should never be set in stone. The reason we gather data is to be able to adjust as we need to. Refer back to the data often, meet as a team often, and adjust as necessary.

An FBA provides teachers, administrators, parents, and others with information about why a person is exhibiting a behavior, and what can be done to teach other more productive behaviors. Writing an FBA can be a very challenging task and should be done by people with a background in behavior analysis as well as knowledge of the student and environment.

As many of you know I love to run. Okay, that’s putting it mildly. I live and breathe running! I started running again in the spring of 2010, and what caught my eye was a 5k run at Oakland University for its autism program.

I could think of no better reason to run since my son Tom is autistic.

After finishing my first run, I caught the fever… the competitive fever that is. Whether it is time or distance, I love to compete against myself and push myself as far as I can go.

While doing this though, I realized there was a bigger reason to run. I run for Tom! I decided to run for my guy, to raise awareness and money for research for autism. I took to every race with the motto, I RUN 4 TOM!! Then I realized to really get my message out, I needed to do the ultimate race: a marathon.

I signed up for the Detroit Marathon, which took place in October. It was an amazing race — an emotional and physical challenge — but I finished. Tom waited for me at the finish line, and told me how proud he was of me! And that was amazing because I am so proud of all that he has accomplished, never giving up, and always pushing forward no matter how hard it is.

After the Detroit Marathon, a running buddy of mine persuaded me to sign up for the Vermont City Marathon in May. So I got my game face on and started training.  I was determined to make a time of 4:15. This wasn’t out of reach since my first marathon time was 4:27.

Only a month and a half away from race day, my running buddy told me she wasn’t going to be able to run. Many people suggested I back out or find a different run. But, of course I said heck, no! I signed up for this bad boy, and I was going to do it.

When I went to pick up my race packet on Saturday, a volunteer informed me that I needed to fill out the back of my bib. “You need to put your name, emergency contact person, medications you take, any medications you are allergic too, and any medical history we would need to know.”

As I looked at the volunteer in amazement, the last thing she said was, “This could be what saves your life.” At that point, I wondered what I signed up for.

When the race started at 8 a.m., the temperature was in the mid-60s and it was pouring rain. “Great!!” I thought to myself. As many of you know, running is not just an endurance sport but also a mental one. Mentally, I was not where I needed to be. I started the race saying to myself, “Suck it up, if this is the worse of the race you’ve got nothing to complain about.”

It soon turned out otherwise. At mile 5, the rain had stopped, and the heat and humidity started to rise. By 9:30, the temperature was 75 with humidity at 80 to 90 percent. I knew things were going to get rough!

I kept going. With every mile, the pain from the blisters on my toes (thanks to soaking wet socks and shoes) ratcheted up. Every step felt like someone kept pulling a tourniquet tighter. But I kept going, until the “two-mile assault,” the name marathoners gave this section of the race. I looked straight up and saw this monstrous hill, wait, I mean, mountain. I guess that’s why they call Vermont the Green Mountain State.

I asked who (and used a few choice names) would put this on a race course. I knew I would be walking up this straight incline. As I got to the top, my calves and legs were cramping. I had drunk plenty of fluid, but there is no way to train for this. I started doing walk and jog intervals, to keep myself from passing out from pure exhaustion.

At that point, I was still between the 4:00 and 4:15 pace. As minutes went by, I fell farther and farther back, finally slowing to less than the 5:00 pace.

I finally felt the emotional break as the tears started to fall. I felt I had let Tom down. As people were starting to bail out of the race, I refused to quit. Once I decide to do something, I’m going finish it no matter what. Tom doesn’t get to quit when he’s had enough or things get too hard, so I sure wasn’t going to either!

As I crossed the finish line and saw Tom waiting for me, tears came down again. I told him I was sorry I didn’t do what I set out to do. He gave me a kiss, told me he was proud, and said that’s a cool medal.

I realized I didn’t let him down. I finished what I started, when I could have taken the easy way out and not even gone or quit when it got tough. But I didn’t. I battled through

Click here to learn more about joining the RUN FOR AUTISM team.

Selfridge Air National Guard Base

29080 Wilbur Wright Blvd. #50
Selfridge Angb , MI, 48045

Phone: (586) 239-5576

http://www.127wg.ang.af.mil/

Coast Guard Sector Southeastern New England

Phone: (866)-819-9128

http://www.uscg.mil/d1/sectsene/

Coast Guard Air Station Cape Cod

58 Reilly Street
Buzzards Bay, MA 02542-1319

Phone: (508) 968-6800

http://www.uscg.mil/d1/airstacapecod/

Natick Soldier Systems Center

15 Kansas Street
Natick, MA 01760-2642

Phone: (508) 233-4300

http://www.army.mil/info/organization/natick/

Fort Devens

1 Quebec St.
Devens, MA 01434-4424

978-796-3911

https://www.devens.army.mil/

Coast Guard Yard

Phone: 410-789-1600

http://www.uscg.mil/hq/cg4/yard/

Naval Support Activity New Orleans

2300 General Meyer Ave.
New Orleans, LA  70142-5007

Phone: 504-678-2306

http://www.cnic.navy.mil/NewOrleans/index.htm

Naval Surface Warfare Center-Crane Division

300 Highway 361
Crane, IN  47522-5001

Phone: 812-854-1762

http://www.navsea.navy.mil/nswc/crane/default.aspx

US Coast Guard Station Maui

Phone: 808.986.0023

http://www.uscg.mil/d14/staMaui

This outpatient study will be conducted at the NIH Clinical Center in Bethesda, Maryland. There will be an initial screening appointment and 3 visits of about 2.5 hours each. During each visit, participants will receive a nasal spray containing either drug (vasopressin or oxytocin) or placebo (a solution containing no medication). After receiving the nasal spray, participants will be scanned using functional magnetic resonance imaging (fMRI) while performing various computer-generated tasks.

Right-handed individuals between 18 and 40 years of age who have been diagnosed with Autism, Asperger Syndrome, or Pervasive Developmental Disorder- Not Otherwise Specified (PDD-NOS) may be eligible to participate. There is no cost for participation. Compensation will be provided.

If you are interested please call 301-435-7962 (TTY: 1-866-411-1010) or e-mail NIMH-ASD@mail.nih.gov. National Institute of Mental Health, National Institutes of Health, Department of Health & Human Services.

SOAPs are any device that delivers audio prompts, the most common example being a tape recorder. Unlike interventions that rely on outside prompting, auditory systems put the user in control, thus decreasing the probably that the user will become prompt dependent. SOAPs have been used successfully to teach work and daily living skills to older students and adults with autism and other developmental disabilities.

The four students in this study used a tape recorder with recorded prompts to increase independence on two daily self-care tasks, washing their hands and brushing their teeth. Each student had an intellectual disability and poor adaptive skills.

Their teacher wrote a task analysis for each activity and recorded the steps on an audio cassette. She left enough time between each step of the task to allow for completion before the next step. The students in the study knew how to use a tape recorder but had not had training or practice at school on brushing their teeth or washing their hands. Each student learned to do each task independently using the audio prompts.

This is an easy system to use at home or at school. To set up an auditory prompt system:

1. Identify the self-care task you are teaching.
2. Write a task analysis. Have someone else go through the steps to make sure you are not forgetting anything.
3. Record the task steps on a tape recorder allowing enough time between steps for completion.
4. Teach your child or student how to operate the tape recorder and model using the recording to complete a skill.

Reference

Mays, Nicole McGaha and L. Juane Heflin. 2011. Increasing independence in self-care tasks for children with autism using self-operated auditory prompts. Research in Autism Spectrum Disorders. 5(4). 1351-1357.

The thought of traveling in public with a child on the spectrum can be overwhelming. Travel involves changes in routine, anticipatory anxiety, and dealing with sensory issues. There is very little research evidence to guide parents, teachers, and caregivers on how to best prepare a child on the spectrum for travel. The majority of what is published on travel training deals with children with physical or significant cognitive disabilities and is not specific to autism spectrum disorders (ASDs). Or it is written as practice wisdom, i.e., what professionals in the field believe to be true after working with the population for years.

Getting Ready for Vacation
In preparing the child on the spectrum for travel, one must decide if the travel is for pleasure (e.g. a family vacation) or is it a part of independent living skills and vocational training.

These tips can help parents and other caregivers prepare children for vacation travel:

• Engaging the child in the planning of a family vacation can help reduce anticipatory anxiety. Higher functioning children can help use the Internet to research the mode of transportation the family is about to take, look up sightseeing tours or points of interest, and review the Transportation Security Administration (TSA) rules regarding what passengers can bring on an airplane as a part of carry-on luggage, how to transport toiletries, etc.

• Giving the child a visualization of what to expect at airport security can help prevent a meltdown. Some airports (e.g. Newark Liberty International) have initiated programs for individuals with ASDs where they are given an orientation to air travel and go through a mock travel scenario. The orientation includes going through security and even boarding an airplane. The program was highly successful and has been replicated at other airports nationally.

• Anticipating what the child should wear on the plane trip can reduce the stress he or she feels in the security scanning line. The guiding principle should be to have the child remove as little as possible from their bodies while going through security. Therefore, an effort should be made ahead of time to reduce metal items (e.g. use belts with plastic buckles). Having the child wear slip on shoes can also expedite the process and reduce stress.

• Reviewing what are the rules about the type of words one must avoid while in an airport or airplane can help avoid embarrassing situations.

• Reviewing when one cannot use electronic devices can also help prevent a meltdown.

• When traveling, it is often a good idea to alert airline personnel that you are accompanying an individual with an ASD. Identify the lead flight attendant and let him or her know what to expect.

• Summer camps that have travel programs can also help children with ASDs learn about and enjoy travel.

Preparing for Independence
For many individuals with ASDs, independence includes learning how to get around his or her community. Many individuals with ASDs may never learn to drive an automobile. Consequently, in order for the person with an ASD to be fully independent and engage in the world of work, he or she must be able to navigate a public mass transit system or utilize a para-transit system. The lack of reliable transportation is one of the most significant barriers to employment.

Training children with ASDs to use public transportation should begin at an early age and should progress in its complexity as the child ages developmentally and masters basic building blocks for more complex tasks. These tips can help parents and other caregivers prepare children for using public transportation:

• Like with travel for fun, the Internet can be a good way to introduce the topic of transportation and preview routes and modes of transportation.

• Parents and caregivers should teach children basic pedestrian, basic safety, and contingency management skills.

• Parents and teachers should review repeatedly what to do if the child/student becomes separated from the group or travel trainer. Emergency telephone numbers should be pre-programmed into the child’s cell phone as a speed dial number. This scenario should be practiced including using the speed dial feature.

• If parents are unsuccessful in training their children to use mass transit, then they should consider adding travel training to the child’s Individualized Education Program (IEP) as a part of his or her transition plan under the Individuals with Disabilities Education Act (IDEA) once the student reaches age 14.

• The state office of vocational and rehabilitative services, which will have different names depending on the state, can also help with training an individual to travel to work.

• College-based Comprehensive Transition Programs may have both travel for work and pleasure as a part of their curricula.

That they did it to benefit OAR and people with autism is downright awe-inspiring. The group is part of the JROTC team at Horizon Science Academy in Cleveland, led by retired U.S. Army First Sergeant and instructor David A. Takacs.

The runners were Jonathon Henry, Travell Robinson, Darwin Henderson, Dominic Holutiak, TyShawn Vaughn, Reginald Warren Jr., Michael Brown, Christopher Benchek, Alundis Hayes, and Juan Rodriguez, and Takacs. They were well-supported by student volunteers, including Michael Huff, Alicia Sattlefield, Adaisjah Strother, Bre’Onna Mays-Taylor, Antoinette Berry-Snowden, Courtnie Adams, and teachers Megan McKinley and Rebecca Borchert.

The team participated in the Rite Aid Cleveland 5K presented by OAR, on Saturday, May 14, at OAR’s invitation. “We wanted to have a group of students showing unity and all running together in formation. These JROTC kids show dedication. In order to participate in this event, they spent hours outside of the classroom to prepare,” explains RUN coordinator Alex van Wees.

Their preparations included raising money as well. Reaching out to parents, friends, neighbors, and family for donations, the team raised $250.

As they got ready to run, the team lined up in a formation in front of all the runners. “We carried our guidon [a military flag that signifies the unit] with us,” explains Takacs.

The group ran in army combat uniform, singing cadence, Takacs says, and he was thrilled when “numerous runners ran along side of us and behind us the entire run. We were extremely proud that we inspired other runners to run with us and sing our cadences.”

“After the run, we were awarded medals, had some breakfast, and spoke to a lot of runners who thanked us for participating and motivating them to finish the race. The students and volunteers left Browns Stadium and went home and told all our family and friends about our accomplishments,” Takacs noted.

Recently honored as JROTC Teacher of the Year, Takacs says he was inspired by his students. “Even though our students have many issues of their own to deal with, they still came together to raise money for a great cause. It helped the students get more involved in the community and aware of autism.”

• Students with ASD had increases in social behavior when educated with typical peers.
• When educated with other students with disabilities, students with ASD had better emotional and behavioral outcomes.
• Students with assistants had fewer behavioral and emotional problems. Conversely, having an assistant significantly impeded social behavior.
• Teachers with more training positively impacted students with ASD by reducing social behavior problems and increasing sense of school belonging.
• Larger schools and classrooms decreased social and emotional problems. Schools with higher numbers of students with disabilities saw increases in feelings of belonging for students with ASD but decreased social behavior.

The authors point out that social behavior is extremely important as a predictor of school and work success and parents and teachers should consider this when choosing inclusive classrooms and deciding to use a classroom assistant. This study is important as many parents chose to move their children to schools specifically for students with autism. While these schools may produce better outcomes for behavior and functional skills, they may negatively impact social behavior.

Reference

Osborne, Lisa A. and Phil Reed. (2011). School factors associated with mainstream progress in secondary education for included pupils with Autism Spectrum Disorders. Research in Autism Spectrum Disorders. 5(3). 1253-1263.

Daniel Padilla is a nationally trained and certified housing investigator at the Illinois Department of Human Rights, which he joined after 10 years of service as a suburban police officer. He has participated in numerous leadership trainings and outreach events pertaining to fair housing. In his spare time, Padilla is a dedicated marathon runner and fundraiser for OAR and also coaches youth football, baseball, softball, and cheerleading. He recently assisted with a Special Olympics event in which his youngest son, Josh, competed. He currently resides in Northlake, Ill., with his wife, Kimberly, and his children, Nick, 19, Alyssa, 18, and Josh, 14.

My son, Josh, came into this world on June 10, 1997. At the time, I had no idea how much he would affect my life. I was oblivious to the passion and strength he would give me as a parent.

At first, he seemed no different than our two older children when they were infants. We ignored the early signs of his silence, believing instead that he had inherited his mother’s shyness as a child. His sister would do everything for him and we thought that perhaps he was just getting used to that.

Then, at age two, Joshua’s doctor began to question his development. My wife and I continued to be in denial, even when he was three and the doctor suggested speech therapy. As long as my wife and I understood what he wanted, we figured that our son was okay. Eventually, we did take Josh to speech therapy but did not see much improvement.

Later, the doctor suggested we take Josh to see a neurologist. Confused and desperate for direction because Josh was her first child, my wife agreed to go. I still felt no need to go, hopeful that all would work out and that there was nothing wrong with Josh.

When my wife returned from the neurologist, she said they had only been with the doctor for a few minutes when he informed her that Josh had autism. I took the news about the diagnosis like any other medical condition. I figured there would be a cure or, at the very least, a pill that would make it all go away.

Changing for the Better
I quickly learned that there is no cure for autism. I began to question how and why this had happened. Where was it that we went wrong? We were told that there was no medical reason or explanation for autism. Frustration set in and my whole world changed.

In the years since, my world has continued to change but for the better in so many ways. Next year, Josh will be an incoming freshman in high school. School has been awesome for Josh, and he has developed into an inspirational teenager who is ready for this new step. To graduate from 8th grade, he had to give a speech. With all of the growth we have seen in his personal life, it should not have surprised me to see how well he did.

I have requested that Josh become a member of the high school football team. I am realistic enough to know that he is not likely to ever play on the field, but I think it is important for him to be part of a team. And part of my mission is to educate the young men on the football team about autism, an awareness I hope will spread through other students at the school as well.

As Josh has grown and his mother and I have continued to learn about autism, I have discovered an autism community that is small, but strong and caring. I found support all around me. Several people in my life have been affected by autism. The son of one of my high school friends was diagnosed with autism. In a conversation with him, we both remarked that we felt like we were the lucky parents. Our challenges are exciting and unlike the “normal” problems or issues facing all other teenage children.

Running for Hope
I have to be honest. My initial intentions for running the Chicago Marathon were solely selfish. I wanted to challenge myself and the Chicago Marathon was the ultimate challenge. Not knowing how hugely popular the marathon was, I was in no hurry to sign up and had no idea it would sell out. When I signed up for my first marathon three years ago, I picked the anniversary date of my mother’s passing in late April. I figured it couldn’t hurt to ask my mom for some heavenly assistance in training and running. Of course, by then, the Chicago Marathon was closed. I felt defeated before I’d even started.

Scanning through the Web site, I learned that it was still possible to sign up if I did so through a charity. Since my mother had passed from lung cancer, I chose the American Lung Association. But as I completed the application, sad memories kept coming up so I began to scroll through the list of charities again.

That’s when I saw OAR. I think my mom was pointing me to OAR, wanting me to run for my son — for hope. I signed up. I started letting people know that I would be running the marathon, and I received a huge amount of support from my family and friends. When they found out that the reason I was running was for Josh, the outpouring of support turned into a flood.

During my training for the first marathon, I thought there would be no chance of me doing a second marathon. OAR asked me to give a speech at its Runner Appreciation Dinner the night before the big day. I agreed thinking that I had nothing to lose since I’d never be doing this again.

Marathon day came. It took me some time to complete the 26 miles, and as I took my last two steps to the finish line, the only thing that came to my mind was the desire to do this run again. It had nothing to do with bettering my time but had everything to do with the reason why I run. In thinking about OAR’s support for their runners and the way its funds are used to support autism research, I felt I had to run again.

By my third marathon, I was beginning to think that running the Chicago Marathon to benefit OAR was more of an addiction. Now, however, I realize that my reason for running is based in a desire for a better future for my son and to further the work of OAR. I am a firsthand witness to the amount of dedication that educators and OAR have for individuals with autism and their families. What I have is not an addiction. Rather, it is a deep-seated passion that has transformed me into a marathon runner for hope.

In a recent study, Teaching Children with Autism How to Respond to the Lures of Strangers, at Anadolu University in Eskisehir, Turkey, researchers Nurgul Akmanoglu and Elif Tekin-Iftar examined the use of videomodeling, graduated guidance, and community-based instruction to teach four children with autism how to respond to strangers who try to lure them away. Akmanoglu and Tekin-Iftar used teaching techniques proven effective with children who have autism spectrum disorders (ASD) and used a three-step sequence to teach this safety skill.

1.      The children were shown videos of typically developing peers modeling a response to approach and lures of a stranger. The response consisted of saying “no” and walking at least five steps away from the stranger.

2.      Students practiced these skills with graduated guidance from their teacher both in the clinical setting and in the community. Graduated guidance consists of prompting moving from most invasive (physical prompts) to verbal prompts and visual prompts. Students practiced the skills until they could complete the sequence with 100 percent accuracy independently.

3.      Each day the students were put in a situation where they were tested. A stranger would approach the child and the child would respond with the sequence learned from the video model.

Each child in this study began the intervention with zero correct responses to an approach from a stranger. After participating in the intervention, all participants responded by saying “no” and walking away from strangers. This technique generalized to new settings and the children maintained this skill after the study, and instruction, ceased.

This is a simple method to teach stranger safety skills to children with autism that parents and teachers can use. One challenge could be finding unfamiliar adults to act as strangers when practicing the skills.

Also, while some of the participants had intellectual deficits as well as autism, they all had the prerequisite skills of waiting, distinguishing different people, imitating verbal behavior, maintaining a task for five minutes, walking independently, and following simple directions. This intervention may not work for children with more significant adaptive skill deficits.

Researchers noted that each participant needed a different number of training sessions and sessions with prompting to learn the intervention. This could make it difficult to use this strategy to teach safety skills in a group setting.

More research needs to be completed on safety skills and children with autism but this study does present some ideas that can be used by teachers and parents.

Reference

Akmanoglu, Nurgul and Elif Tekin-Iftar. (2011). Teaching children with autism how to respond to the lures of strangers. Autism. 15(2) 205-222.

My son, Peter, earned his Second Class rank at Boy Scout summer camp last summer and three merit badges along with it. But that was not his greatest achievement, in my opinion.

Peter has Asperger Syndrome, and has always faced challenges in handling new situations and adversity. His scouting experience has helped him – and us – more than we could have hoped, both in socialization and adjusting to change, as well as giving him tremendous pride in his accomplishments.

So when he did not pass the swimming test on the first day of camp – even though he is a very strong swimmer -I thought it would be a very long week. He had planned to work on another aquatics badge, which he now could not do.

Fortunately, I was able to remind him of the calming techniques he has learned in a private conversation. He had not been in the water since the previous summer, and was in fact having a difficult swim after the long layoff.

(Although I am not a formal leader, I accompanied the troop to camp as a “registered adult.” I had volunteered as a “leader” so that my presence would be “typical,” but my main role is helping Peter manage not only his scheduling, but also his anxieties and emotions.)

After he calmed, I persuaded him to attend the instructional swim sessions in the afternoon – and he passed the test the first time he tried again. He also agreed to select another badge to work on, to make the most of his camp week (and the replacement badge, Nature, was the first one he finished).

Staying in the Pool
But despite his love of the water, and natural ease when swimming, he would not go to the “swimming hole” with his peers. Jumping off a rock into a local creek was one of the highlights of this particular camp. But each time I asked if he wanted to go, Peter always repeated, “I prefer to only swim in the pool” (with a solid floor, rather than a muddy stream bed).

By the end of the week, he had cooked his own lunch to finish his Second Class rank requirement, and completed his Computers and Photography badges. I was also proud that he had become comfortable just hanging out with”the guys” around the campfire, perhaps the most difficult task he faced. (“Dad, you can go back to your tent now!”)

So I thought the swimming hole was worth another try. Since Fossil Rock was located at the end of a steep hike of over a mile through the woods, I suggested that we at least go there when the boys next went, just to see what it was like – he and I had loved hiking together long before he joined Cub Scouts. At the suggestion of another adult, we went immediately after his swim class, so that he had his swim trunks and goggles with him.

Better than the Birthday
What happened next was the highlight of my summer – even more than spending my 50th birthday at camp with my son, without the intrusion of video games and the Internet.

As we approached Fossil Rock through the woods, we could hear the typical laughing and shouting of boys at play for at least 10 minutes, but could not see anything through the thick growth. The noise, and our anticipation, built as we descended further and further into the woods.

We suddenly emerged into the brilliant sunshine of the clearing at the swimming hole, and were overwhelmed by the noise and exuberance of teens at the end of a week on their own. Peter immediately turned to me, and said the words I will always remember, “Dad! I’m going in!” And that is what he did (after changing back into his suit behind a tree).

He was so excited that he even forgot to take off his watch. It became waterlogged – a big deal for a boy who perseverates on time. I gave him my watch for the last days of camp, and called my wife, who was able to get another at Wal-Mart before we got back to camp. I immediately told Peter, so the rest of his week wasn’t ruined worrying about the time.

The $5 replacement cost was well worth seeing the joy and excitement in my son’s face, and the pride I felt in Peter’s growth, when, for a few moments, at least, the boy in him “washed out” the autism.

Copyright Stanley P. Jaskiewicz 2011

The idea of summer camp brings visions of roasted marshmallows and friendships forged around a campfire. In recent years, the options for summer programs have expanded beyond the traditional and parents, including parents of children with autism, now have a variety of choices to consider. While social development is one of the principal benefits of summer camp programs for all children, it is particularly important for those with autism.

At the same time that camp can provide unique and valuable opportunities for building social skills, it can also present special challenges. Finding the right camp requires matching your child’s needs to a program that can provide the appropriate level of support for social development along with fun and sun.

Difficulty in social interaction is one of the primary features of autism regardless of cognitive level. Children with autism do not learn or use social skills with the same ease and flexibility as typically developing children. Behavior issues and communication deficits may compound social problems. During the school year, intervention is generally concentrated on academic skills. Even if supplemental social skill intervention is provided, it is usually not a primary goal.

Summer camp experiences can provide a unique opportunity to develop social skills in a fun, more relaxed environment. Whether it is the focus of the program, or is an extra benefit related to a special interest, summer camp is a perfect opportunity to develop social skills and grow in independence.

Do the Homework
In choosing a camp for a child with autism, it is important to do some homework. Each camp, and each group of campers, has a unique personality. The first step for any family is to determine your child’s needs and your expectations of the camp experience.

The choices can seem either overwhelming or sorely lacking, depending on your needs. There are sleep-away camps, day camps, special interest camps, and therapeutic camps focused directly on social skill development. Some are located far from home, and some, if you are lucky, might be right in the neighborhood. Some are highly structured while others are self-directed. Most camps have some variation of social development, personal growth, and independence as goals.

Knowing what level of support your child requires to reach these goals is the key to finding the right fit. It is essential to know your child’s strengths and needs before you start looking. When researching programs, you should ask about:

Camp philosophy: The difference between programs is largely the level of support and direction. Therapeutic camps generally have more direct instruction and a supportive curriculum while recreational camps usually focus on simply enjoying activities and friendship. From a therapeutic standpoint, consider that evidence-based interventions such as Applied Behavior Analysis, peer training, and social skills groups have the most research support as effective strategies for social skill development in children with autism. It may be helpful to begin by asking the camp director about his or her philosophy and experience.

Staff experience and support: Many children with autism will require a high degree of support to engage in activities and benefit from a camp experience. The ratio of staff to campers is a good measure of the level support available to your child. However, simply having a high number of adults in the area is not sufficient. The experience and training of staff is an essential issue. What is the education and experience level of the staff? Have they worked with children with autism in the past? What autism-specific training do they receive?

Meeting special needs: Children with autism have a variety of special needs, and it is important to know that the camp is prepared to meet these needs in a safe and effective way. Issues such as wandering or elopement require a high level of supervision. Water safety can be a concern for unpredictable children.

Concerns such as behavioral problems, anxiety, social deficits, special interests, repetitive behavior, and special diets require a clear plan of how these issues will be addressed and by whom.

Inclusion: Summer camp can provide a wonderful opportunity for inclusion but proper planning is essential for a successful inclusion experience. Unfortunately, isolation and bullying are common experiences for children with autism when they are placed in inclusive environments without the proper supports. Summer camp should be a positive experience, which strengthens social connections, not an experience of social rejection.

Children with autism do best when social demands are presented in manageable pieces. Success breeds success. Peer supervision and support help to create a positive experience for all. Many programs have had success with peer training. Does the camp have proactive strategies in place to support positive social interactions between children with autism and typically developing peers? How much supervision is in place during unstructured or recreational time?

It would be worthwhile to discuss inclusion and peer training in depth with a camp director prior to making your choice.

The goal of summer camp is a successful social experience. It is an opportunity to develop skills, friendships, and independence while having a great deal of fun. Families can help to generalize skills learned in a summer camp environment by staying involved, knowing the interventions that work, and creating opportunities to practice new skills throughout the year. Finding the right program requires knowing the needs of your child and the strengths of the program. With the right match, your child can have a fabulous summer and build memories that will last a lifetime.

Dana Commandatore is an advertising director, author, disability advocate, and mother to a son with autism. Commandatore and her husband, actor Michael Broderick, started RethinkingAutism.com in 2009 to change the media conversation about autism from causation and cure to improving the quality of life of individuals on the autism spectrum. In 2006, she wrote and published

“Mama, Mama, Mama…” is how my son starts every sentence directed to me. He doesn’t seem to realize that he does not have to preface everything he says by calling my name. But I know how hard he has to work to find those words so I don’t mind, I’m just thankful that I get to be his mom.

When I was 20 weeks pregnant, I had an ultrasound that revealed a possible problem with my pregnancy. I immediately scheduled an amniocentesis because I was confident that I wouldn’t be able to handle a baby with any problems. Relieved that the test results were normal, I was on my way towards having a healthy baby. Then, at 32 weeks, I was hospitalized for complications.

One month later, I delivered Michelangelo via an emergency C-section. From the beginning, my husband, Michael, and I knew Michelangelo was different. When he was about three months old, we had some concerns that he was either deaf or blind since he never followed our gaze or voice. After a few of our own assessments, we determined his sight and hearing were just fine.

Different—And Happy
I went back to work full-time and Michael split his daily duties between his career and being a father. Michelangelo met all of his developmental milestones but there were no signs of speech by his first birthday. We also noticed that he showed no interest in other children or adults. When we took him to the park, all he wanted to do was swing. Even though he was different, he seemed very happy—as if the two are mutually exclusive.

In June of 2004, we decided to move from our tiny New York City apartment to a tiny house on the west side of Los Angeles where we could afford for me to stay home with him for a few years. At almost two years old, Michelangelo still had no speech and his differences were becoming more obvious. I followed my intuition and had him tested. A few months after his second birthday, he was diagnosed with autism.

The irony is that my son was diagnosed with something that could not be tested for…well, not yet. I hear that we are close to developing a pre-natal test that could determine one’s chance of having an autistic child. The problem is that society is so afraid of autism that many women might decide to terminate children who may have autism without ever really knowing what it means to parent one.

Letting Life Happen
My experience has been anything but tragic. I learned that, through acceptance and understanding, there is much progress. Just because people with autism are different does not mean that their lives are any less fulfilling.

The reality is that we don’t spend our weekends at other kids’ birthday parties because we are never invited. We can’t go to movie theaters or sporting events. My husband doesn’t coach a Little League team and I’ve never picked our son up from a play date. Instead, we spend our weekends at the aquarium and let Michelangelo choose what he wants to do on his birthday. We develop a bond by watching the same movies over and over again and we are fine with giving up our L.A. Galaxy season tickets. Michelangelo doesn’t really have friends but he likes to watch his dogs play in the backyard while he stims (short for self-stimulatory behavior) on his swing.

We’ve changed our plans and let life happen. We have no idea if he will play sports in high school or if he will be able to hold a fulltime job so I try not to waste energy worrying about things I can’t control. Instead, I fight for his rightful place in school and try to educate people about his differences. I want him to develop the skills to advocate for himself when he feels threatened and the confidence to live his life the way that makes him happy. We push him when necessary and cut him a break when he needs one.

Michael and I try to visit his world when he lets us for we know how hard he has to work to live in ours.

I almost gave up on motherhood because I was searching for perfection. I’m just grateful that my son taught me how to become enough of a mother that I was able to forgive myself for doubting my ability to handle something so unexpected and so beautiful.

Punjabi, who lives with her parents and Henry in Boston, Mass., is new to the RUN FOR AUTISM, having recently completed her first run, a half marathon in New York City on March 20. Through that one effort, she raised more than $3,500 for OAR.

Like many other RUN FOR AUTISM team members, Punjabi came to OAR because she wanted to get fit. “I was pretty active in college but after I graduated and started working in finance, I was sitting at a desk all day. I needed a way to stay in shape, so I began training for a half marathon.” She chose the New York City Half Marathon, only to be told there were no registrations left.

She turned to the charity list and soon found OAR. “I looked at the Web site and read the newsletter. It seemed like a wonderful organization. Autism awareness is a cause I’ve always felt strongly about, and running for OAR felt like a great way to contribute to it.”

When she found OAR, she not only found a great cause, she also found a great resource. She has passed on OAR’s Web site to her mom and dad for their information. “The information is relevant to what we want and need to know. OAR does a great job of connecting families going through the same experiences and educating us on developments in the autism community. My mom and dad are dedicated to Henry’s wellbeing and are always seeking out ways to learn more about how they can help him. Henry has brought us closer together and taught us important virtues, such as perseverance.”

While her brother stays active and busy, his diagnosis means he cannot read or write, suffers from anxiety and depression, and needs full-time care, which “our mother selflessly provides,” Punjabi says. That doesn’t mean Henry doesn’t live a full life, Punjabi points out, going to a special needs school, participating in an Arc program, volunteering at local church, and being involved in the community as well. His parents, sister, and a wider family circle as well as friends provide him with an active social life.

In fact, Punjabi’s run for autism turned into a family affair. “My parents, three of my cousins, a couple of friends, and Henry all came to cheer me on and see me finish. Henry was super excited.” One reason to run, a lot of people educated about autism, and thousands of dollars raised for autism. That’s a great way to add up numbers.

Want to join the RUN FOR AUTISM team?  Visit http://www.researchautism.org/news/run/index.asp.

Amount of OAR Funding: $30,000.00

Researcher: Laurie A. Vismara, PhD, BCBA-D

Purpose: The purpose of the proposed study is to demonstrate the efficacy of a telemedicine-delivered parent coaching program for providing innovative, individualized interventions to families of children with autism spectrum disorders (ASD). The project’s overall goal is to develop and test the use of telemedicine technology to deliver a manualized, parent-implemented intervention for families of children with ASD, ages 15-48 months. The intervention will use an Internet-based video conferencing program to teach families how to integrate the parent curriculum of the Early Start Denver Model into natural, developmentally and age-appropriate play activities and caretaking routines in their homes.

At the end of the study, Dr. Vismara plans to have created written materials involving interactive treatment manuals, fidelity measures, and procedural implementation materials for providing remote intervention and support to parent-child interactions as they occur in daily routines as well as a proposal for a larger scale, controlled study.

Why Is This Study Needed?
As families know, there are various challenges to receiving care for a child with ASD, including long waiting lists and few specialist services. Barriers to service delivery and utilization are even more exacerbated for families living in rural or remote areas, often resulting in limited access to preventative mental health services in general and parenting ASD interventions in particular. Telecommunication technology can support long-distance clinical health care; however there is little information as to how this resource may translate into practice for families with ASD.

Study Methodology In Brief
Eight parent-child pairs will be recruited to participate. The children will range in age from 18 months to 4 years old with a diagnosis of ASD. Families will participate in 12 weekly sessions. Each week, they will be taught a specific topic of the Early Start Denver Model (ESDM) Parent Curriculum through a live, two-way interactive video conferencing program and webcam with split screens, allowing participants to see, communicate with, and hear one another in real time.

ESDM is a developmentally based, relationship-focused, and behaviorally informed intervention developed to be delivered by parents within typical parent-child play and caretaking activities.

During the study, parents can access the program from any computer or laptop, enabling families to practice the ESDM interactive procedures anywhere in their homes (e.g., play room, bedroom, kitchen, backyard) and to solicit coaching and feedback on unlimited types of child behaviors (e.g., communication, self-help, play, problem behaviors).

Weekly online sessions will involve seven segments that include:

1. A brief dialogue and observation of a parent-child interaction to review practices from the previous session (this will also serve as the data sample for weekly measures)
2. Parent-therapist discussion and feedback of the interaction
3. Therapist introduction of the new teaching topic with videos to demonstrate key principles and behaviors
4. Parent-child interaction in a play or caretaking routine with therapist coaching on the new point
5. Parent-therapist discussion of the interaction
6. Parent-child interaction to practice the new point in a different activity with therapist coaching
7. Closing or a final review of the new point and other developmental objectives that have been observed

At the end of each session, summary sheets, video examples, and suggested practice exercises of each coaching topic will be uploaded to a collaborative secure website, allowing parents to access the material and to carry out the activities with their child during the remainder of the week. Parents will also be asked to record one or two additional activities from a category activity list that what was not targeted during the session to be uploaded onto the Web site, which will be reviewed and discussed during weekly check-in calls scheduled with families before each session.

Researchers

Laurie Vismara, PhD, BCBA-D, is a board-certified behavior analyst and an assistant research scientist in the Department of Psychiatry and Behavioral Sciences at the University of California Davis Medical Center in Sacramento, Calif. She specializes in conducting treatment research with young children with autism and their families. She is collaborating with Sally Rogers, PhD, in examining treatment efficacy and effectiveness in autism using the ESDM, as well as developing a coaching curriculum and parent education model for immediate provision of intervention to at-risk infants and toddlers. In addition, she studies the effectiveness of distance coaching through the use of telemedicine technology, as well as various teaching modalities to best disseminate evidence-based intervention models to families and community-based service providers.

The Bonduel School District, a rural public school with just under 900 students in Northeast Wisconsin, was chosen to serve as a model rural school site for the National Professional Development Center on Autism Spectrum Disorders project during the 2008-09 (middle school) and 2009-10 (high school and elementary) school years.

As participants in this national project, several staff members, including general and special education teachers, speech and language therapists, and an occupational therapist, along with a parent representative, committed to learning more about evidence-based practices that could be used with students with autism spectrum disorders in our school district.

With guidance from experts from the Waisman Center at the University of Wisconsin-Madison, staff at the Bonduel Middle School determined that there was a need to increase social opportunities for students with autism spectrum disorders (ASD) during the 2008-09 school year. When considering the options of evidence-based practices available at that time, it was determined that peer-mediated instruction and intervention (PMII) would be the most appropriate intervention to consider implementing.

At the middle school in the first year, four students with autism spectrum disorders (ASD) and 18 typically developing peers participated. In 2009-10, the district added one group at the middle school, two at the elementary school, and one at the high school. A total of seven students with ASD and one student with another disability who has social needs participated and 46 typically developing peers. This year, there are a total of eight students with ASD and 40 typically developing peers trained as peer supports.

As we implemented a peer support program, we discovered some practical steps that helped us as we developed the program:

1) Identify staff members who have a passion and desire to assist students with autism spectrum disorders or students with other disabilities who experience social challenges. This is a critical step to success related to the implementation of a successful peer support program. A great amount of time, dedication, and commitment is required.

2) Identify a student (or students) with social needs and discuss the possibility of participation in a peer support program with each student’s parents. Contact parents to discuss the purpose of creating a peer support network to assist their children with developing social skills and establishing and maintaining relationships with non-disabled peers in a safe environment. Obtain written parental consent.

3) Ask general education teachers to identify five to eight non-disabled students at the same grade level who could serve as peer supports to the students with social needs. Requirements to be considered as a peer support = kind, caring, and compassionate!  That’s it…peer supports need to possess these positive character traits. Once a student in need of social supports is identified, we ask regular education teachers to nominate socially typically developing students who may serve as strong social supports (i.e. criteria: kind, caring and compassionate). We prefer to have between five and 10 typically developing peers per student with social needs to allow for manageable group meetings as well as to ensure that social supports are scattered in a variety of classes/settings throughout the day.

4) Invite non-disabled peers to participate in the peer support group. Give each non-disabled peer who has been nominated an invitation and parental consent form and discuss the purpose of the group. We called our groups “Power PALS” (Peers Assisting Leading and Supporting) at the middle school during the first year and “P.O.P.S” (Power of Peer Supports) at the high school during the second year of the project. Be sure to include information about training on the invitation (i.e. date, time, location of training). Food (e.g. pizza and soda) has been a great motivator for initial training.

5) Train non-disabled peers. Staff in our district used the Sixth Sense Curriculum by Carol Gray. This curriculum focuses on reviewing the five senses (hearing, sight, touch, taste, and smell) and teaching students about the sixth sense, or the social sense. Staff modified the Sixth Sense Curriculum and developed a PowerPoint presentation to assist with visuals during instruction.

The training was provided during a lunch period. An adult instructor (teacher, therapist, psychologist etc.) provided the training, which takes approximately 30 minutes. Proper education and training is critical to the success of the program.

Once students begin in the program, they typically choose to continue with the exception of one or two here and there. We have had a few students move out and we have recruited new students to fill in. There have also been students who have requested to join a group. This has been allowed in a few cases as the students requesting to participate also could benefit from the interaction. We will continue to recruit students each year.

6) Coach non-disabled peers. After the non-disabled peers are trained, adult facilitators meet weekly with the students to discuss ways that they can help students with social needs throughout the school day. Coaching is necessary as guidance is needed to help the non-disabled students better understand their roles.

The hope; however, is that the groups will become independent of needing adult facilitation as the students become older. Our goal is that the high school groups will run mostly independently and receive guidance from facilitators related to planning activities or answering questions as needed. We currently have a group at the high school operating in this manner, which is incredible!

7) Continue to assist non-disabled peers pertaining to ways they can extend interactions with students with social needs in the classrooms, hallways, during lunch, and during extracurricular activities. Provide the non-disabled students with scripts, open-ended conversation starters and other activities to create opportunities to interact with students with social needs.

8) Invite students with social needs to join the group. After several weeks of coaching non-disabled peers, adult facilitators in our district decided to invite the learners with social needs (all have ASDs) to participate in the weekly peer support groups.

We believe that this step was critical to enhancing the relationships among all of the students and would allow each student with ASD to participate in a safe group setting surrounded by non-disabled peers who understand his/her needs. This was a great success!

Students with social needs are not included in the initial training with the typically developing peers because the staff leaders use that training to discuss the social needs of the students and identify ways to help.

Annually, we have provided ‘refresher’ training about the purpose of the program and have included students with social needs in these trainings (as they were more global in nature). We discuss how our goal is to help and support one another and make our school a safe and healthy place. The response from the students on the spectrum has been interesting during and after these trainings. They naturally have wanted to help and have been excited to be involved in a leadership program aimed at improving the school climate.

9) Plan activities that are fun and motivating and assist with the development of social understanding. Adult facilitators have continued with weekly meetings with each group over the past two and a half years at the middle school and over a year at the elementary and high school levels. This has allowed for strong relationships to be developed within each group.

Additionally, non-disabled peers have learned numerous ways to support students with social needs throughout the school setting. Large group activities with all peer support groups have taken place including attendance at a minor league baseball game, movie night, youth service learning projects, and a lock-in. These activities have brought many students together for a common cause, which has been to support, encourage, and develop positive relationships with one another.

10) Make the time! Implementation of any program or project takes a great amount of time, dedication, and commitment. Through participation in the National Professional Development Center on Autism Spectrum Disorders, our staff was provided with the knowledge and opportunity to better assess the needs of students with ASDs and ultimately develop a program that has now become a district-wide effort to improve socialization opportunities for many students with autism and other social challenges.

New students have been identified as needing supports since our first year. Since we have expanded the program district-wide we have needed to recruit at the elementary and high school levels. The middle school groups have remained pretty constant.

Adolescence is an especially challenging time in life, and this program appears to have provided much-needed social support for several students over the past couple of years. Over 50 students have participated in peer support groups throughout the district. One high school group operates independently of adult facilitators. Several non-disabled students get together weekly to support a student with autism and have developed relationships that are likely to continue beyond high school.

This program has been the most rewarding experience that I have been involved with thus far in my career. Students with autism who once struggled to connect with non-disabled peers now express that they have friends and enjoy coming school. Their social skills are improving which will benefit them throughout life. It doesn’t get much better than that!

Difficulties with employment for individuals with autism do not end with finding employment, maintaining employment is also a challenge. Employers report unhappiness with employees who do not know what to do when something goes wrong. A recent study, Teaching Adolescents with Autism to Describe a Problem and Request Assistance During Simulated Vocational Tasks, focused on techniques for teaching four secondary students with autism how to ask for specific help when something went wrong on the job.

Already familiar with the job tasks, participants were taught scripts for stating what was wrong and questions to get help to correct the problem. After learning the scripts, the teacher randomly set up situations during work where the student would be missing material, have broken material, or have incorrect material. For example, when completing the task of emptying the garbage, the bags would be missing. The student had to approach the teacher and say, “The bag is missing. Do you know where I can get more bags?” which he had been taught using a script.

Each participant learned the scripts and used them independently while working on work tasks in the classroom and an office location. While further research is needed to assure this technique can generalize to community work settings, scripts may be helpful in increasing communication and getting help to solve a problem, skills necessary for maintaining employment.

Reference

Dotto-Fojust, K. M., Reeve, K. F., Townsend, D.B., and Progar, P.R. (2011). Teaching adolescents with autism to describe a problem and request assistance during simulated vocational tasks. Research in Autism Spectrum Disorders. 5 (2), 826-833.

Amount of OAR Funding: $29,999.00

Researcher: Karen Hobden, Ph.D., Research Associate and Core Program Coordinator, Developmental Disabilities Institute, Wayne State University

Timeframe: This study began in January 2011 and will be completed by December 2011. A research summary detailing the results of this study will be submitted to OAR by March 2012.

Purpose: The proposed study will examine the effectiveness of a new intervention designed to improve emotion recognition skills in children with autism spectrum disorders (ASD). “The Transporters” is an animated children’s series developed in the United Kingdom that features vehicles with the actors’ faces. The series, which is available on DVD, consists of 15 five-minute episodes each featuring a different emotion or mental state. The proposed research will examine the effectiveness of using “The Transporters” as a tool to improve emotion recognition skills.

Why Is This Study Needed?

Individuals with ASD display impairments in recognizing emotions in facial expressions, vocal intimations, and body language. These deficits in emotion recognition may contribute to the difficulty experienced by children and adults with ASD in forming and maintaining peer relationships, placing this population at risk for social isolation, victimization, depression, and underemployment.

Study Methodology In Brief

The Transporters series, consisting of 15 five-minute episodes, features eight animated vehicles onto which real-life faces of actors have been superimposed. The actors’ ages, genders, and ethnicities were varied to enhance generalization. Each of the 15 episodes focuses on a particular emotion or mental state (e.g., happy, sad, angry). The developers believed that a series featuring vehicles that run on tracks or trolleys would be especially appealing to children with ASD, because the movement of the vehicles would be predictable and repetitive. They further reasoned that attaching faces to vehicles, which move in a predictable way, instead of to human bodies, which move in an unpredictable and confusing way, should enhance learning in children with ASD.

The DVD package includes 30 interactive quizzes and a guidebook for parents to use to facilitate their children’s learning.

The effectiveness of the British version was examined in a sample of children with ASD in the United Kingdom. Twenty children were given copies of The Transporter DVD and asked to watch at least three episodes every weekday for four weeks. Participants’ emotion recognition and vocabulary were tested before and after the intervention. Participants exhibited significant improvements in emotion recognition.

In Dr. Hobden’s study, three groups of 20 children (aged 3 to 8) will be recruited. The groups will consist of two clinical groups (ASD intervention and ASD control) and one group of typically developing children (typical control). Children in the ASD intervention group will be asked to watch at least 3 five-minute episodes every weekday for four weeks, for a total of at least 15 episodes per week. Parents will be asked to keep a log of the number of episodes their children watch. Children in the ASD control and typical control groups will receive no intervention.

Emotion recognition skills will be assessed at three time points: before the intervention, immediately after the intervention, and three months after the intervention. The results will be analyzed for changes in emotion recognition scores over time as a function of group membership while controlling for effects of age, gender, and verbal IQ.

Researcher

Karen Hobden, Ph.D., has been a research associate and coordinator of the Dual Diagnosis Project at the Developmental Disabilities Institute at Wayne State University since 2006. She has a doctoral and master’s degree in social psychology, with more than 15 years experience as a project manager in the field of mental health, including a five-year, longitudinal study of mental health outcomes in homeless youth and a 10-year follow-up of dementia in a representative sample of Canadian elderly.

Teachers set up picture schedules and video schedules for transition times throughout the day. Picture schedules were set up by:

1. Having the student model the steps that needed to happen during transition
2. Taking pictures of each step
3. Laminating the pictures
4. Putting the pictures in sequential order
5. Storing the picture schedules in a central location

Teachers also set up video schedules for the students by:

1. Having the student model the steps that needed to happen during transition and videotaping each step
2. Editing out any undesirable behavior so the transition in the video is as desired
3. Making the videos available to watch on a centralized computer

All students increased independence during transition using the video or picture schedule.

How can parents and teachers decide which strategy to use?  Students who look away frequently or have difficulty with sustained attention may be better suited to use picture schedules. Those who enjoy watching films and can sustain attention may benefit more from video schedules.

Video schedules do have some obvious limitations. They may be more difficult to produce and less transferable to different settings than picture schedules. Either option, however, offers a great visual strategy for increasing independence and desirable behaviors in individuals with autism.

Reference

Cihak, David F. (2011). Comparing pictorial and video modeling activity schedules during transitions for students with autism spectrum disorders. Research in Autism Spectrum Disorders 5(1) 433-441.

Bowel Training
Often, bowel training is completed along with urination training. Sometimes, however, the child becomes urine trained, but continues to have bowel movements in a pull-up or other inappropriate locations. In this case, you first need to conduct an assessment of why the child is not bowel trained and then develop a plan of action accordingly.

There may be several reasons why a child is not bowel trained, the main reasons being medical issues, noncompliance, skill deficits, adherence to a ritual or routine, fear of eliminating in the toilet, and using bowel “accidents” to serve some other function (i.e. to escape demands, to gain attention from others, etc.). Whether or not you need a toilet-training plan, behavior plan, or medical intervention will depend on the reason why the child is not yet trained, so an assessment period of at least two to four weeks must precede any training plan. During this time, data and information are collected and analyzed to determine the function of the problem. Obviously, if the cause is determined to be medical, seek the recommendations of an appropriate physician.

If the cause is determined to be a skill deficit, initiate a training package consisting of prompted toilet sits (limited to the most likely times of day when your child needs to have a bowel movement), positive reinforcement for success, visual cues to teach the child what she should be doing on the toilet and once again either prompting to the toilet or punishment for accidents.

With a ritualistic behavior or fear of eliminating, try a gradual desensitization plan where you introduce appropriate toileting in small steps, offering reinforcers for success along the way. For noncompliance, the first step is often increasing the potency of the reinforcer being offered for success and initiating a punishment-based component for accidents. If that does not work, you can try a procedure whereby suppositories and enemas are used as prompts. For this procedure, always seek the advice and guidance of a medical professional.

If the bowel “accidents” are serving some other function, you do not need a toilet training intervention, but rather a more traditional behavior plan such as that which would target escape-maintained, attention-maintained, or access-maintained behaviors. Seek the advice and guidance of a behavior analyst in these circumstances.

Whichever plan you choose for bowel training, you must watch closely for any signs of constipation. Long-term constipation will not only result in a medical issue that will need to be corrected, but will undermine your treatment plan because the eventual bowel movement is likely to be painful, thereby punishing any compliance with going on the toilet. It is suggested that if the child does not have a bowel movement for three days past his or her typical schedule that the bowel training plan be temporarily placed on hold until bowel movements become regular. Then, it is time to start again, making modifications to prevent future episodes of constipation.

Keep in mind that with good behavioral intervention techniques, a commitment on the part of the trainers, good data collection and analysis, consistency, and some advice from professionals if needed, toilet training can be mastered relatively easily and rapidly.

Toilet training is a pivotal skill for a person with autism because mastering the skill can significantly increase a person’s independence in his or her home and community. It is also one of those skills that parents of children on the autism spectrum struggle with.

The good news for parents is that it becomes easier once you realize that you teach the skill just like any other skill — through behavioral intervention techniques.

Prerequisite Skills
But before you can get started, there are prerequisite skills a child needs. Do not go strictly by chronological age and do not “wait for the child to be ready.” Your child is ready to begin toilet training once the following prerequisites are met. First, the child needs to be able to sit on a toilet for about three minutes. Second, her bladder should be able to hold urine for at least one hour. Third, serious problem behaviors should be at a relatively low level. Last, toilet training will be easier if the child has already mastered some basic self help skills such as pulling up her own underwear.

Urination Training
Initial urination training consists of four major components. Each component has its own purpose and is a necessary part of the treatment package.

1. You will be bringing the child to the toilet on a set schedule. Schedules teach the basic routine and behaviors associated with being toilet trained. I usually begin with a 30-minute schedule. Schedules more intense than 30 minutes will not allow for periodic accidents, which are also a necessary part of the training.
2. There must be positive reinforcement for success on the toilet. Reserve one highly potent reinforcer, just for the toilet training intervention. Each time the child appropriately urinates on the toilet, on his schedule, give him access to the reinforcer. This strategy increases the child’s motivation to have his urinations on the toilet.
3. Introduce a request. Use whatever form of communication is easiest for your child. Forms of communication can include a verbal word, a picture exchange, a manual sign, etc. Prior to bringing your child to the toilet each half hour, prompt her to make the request and then respond with a naturalistic phrase such as “You have to go to the bathroom? Okay, let’s go.” This request component will allow for future independence.
4. Without an accident correction component, your toilet training plan will not be effective. Whereas the schedule component teaches the routine of toilet training, correcting accidents teaches the child when he should be requesting to use the bathroom. You have two choices. Some plans suggest punishment-based procedures. Other plans use a prompting procedure in which the therapist uses a quick verbal statement to slightly startle the child thereby temporarily interrupting the urine stream. The child is then quickly prompted to the toilet where he is encouraged to finish urinating. Any urination in the toilet is then followed by a reinforcer. Typically, this is the procedure that I use for accident correction because it turns the accident into an effective teaching trial.

From the first day that the treatment package is implemented, data are collected on the frequency of appropriate responses, frequency of accidents, and percentage of urination on the 30-minute schedule. Treatment decisions and modifications should be made based on a daily review of the data. Keep in mind that toilet training is an intensive procedure that usually requires the dedication of a trainer for a number of hours each day. It is also helpful to conduct the training directly in the bathroom with the child wearing limited clothing.

Next week we’ll share Dr. Cicero’s advice on bowel training.

To help spread autism acceptance and understanding, OAR joins the autism community in asking you to share your story on April 2, 2011, Autism Awareness day.  Autism dad, Stuart Duncan, started this movement by reaching out to autism groups small and large to set aside differences of opinion and work together towards the goal of moving beyond awareness, to acceptance and understanding. Join thousands of others and be part of this social media campaign.

Take a few minutes to finish the statement “This is what autism is to me” and go viral!

- Email your story to friends, family, and colleagues.

- Add your story to the OAR blog.

- Post your story on Facebook.

- Add #autism to your Twitter posts.

-  Call on your friends and family to share their stories in return.

Autism awareness is not enough.  The autism community is coming together with strength and numbers to gain autism acceptance and understanding.  Be part of this community by putting a face to autism.

Share your story in the comments section.  This is what autism is to me…

What they desperately needed was a guide to direct them along the path of advocacy. They found their own way, Osborne reports, using books, articles, Google, and their community of friends, family, and military contacts.

Osborne, who joined the Navy in 2001, met his wife while he was stationed in Virginia Beach, Va., and they married in 2002. Three children, Amilea, 7, Jacob, and Mary, who will be 3 in April, soon followed. “Jacob started showing signs of autism at 14 months and was officially diagnosed shortly after his second birthday. He received early intervention therapy for about a year and then started applied behavior analysis (ABA) therapy when he was 3.” His son is just below grade level academically but is developmentally delayed in communication and socialization.

The First Step of Many
Today, Osborne advocates for military families who have a dependent registered in the Exceptional Family Member Program (EFMP) and other parents of children with autism. In his current assignment with Naval Operations (OPNAV) in Washington, D.C., he wrote multiple papers identifying the need to increase awareness of the Exceptional Family Member Program and for the program to provide additional support to families who have dependents registered as Exceptional Family Members. As he works with Navy leadership to enhance their support, Osborne’s first step is to find a way to ensure that families get information about military and community programs, resources, and services that are available in their local communities.

He is currently in the process of establishing a channel to pass needed information along to the families who need it and create a network of Navy EFMP families in the Washington, D.C. region. He also organized support groups that assist military parents in locating military and local community resources for their children and help them navigate through the Navy EFMP application process.

It’s obvious from his words and actions that Osborne is committed to the Navy and to families like his who need support and information for their children with special needs. He’s a man with a mission and on his way to fulfilling it.

Exceptional Commitment
That mission has not stopped him from additional work in service to others. He recently received the Combined Federal Campaign Hero award, a national award for exceptional commitment to Department of Defense activities as a federal employee and dedicated service to community-wide volunteerism on a personal level.

As team captain for his office, Osborne motivated the staff of 19 to raise more than $9,000 for the campaign, 223 percent above the original goal. “I personally talked to each member of my office about the CFC campaign and its importance. I informed them of various organizations and what services they provided to the community. I notified them about when and where CFC organizations were coming by to visit our area. I always made myself available to answer any questions that my colleagues may have had. That personal connection led to 100 percent participation.”

He believes in participation by volunteering as well. He gave more than 100 hours of his time in 2010 to nonprofit organizations like Homes for Our Troops Organization, the Washington, D.C. chapter of the U.S.O., and the Learning Disabilities Association of Montgomery County.

Osborne would be the first to admit he doesn’t have all the answers to the questions that military families with children with special needs may have but he’s happy to be the one those families can count on to find the answers, support, and information.

1.       Makes friends

2.      Personal safety

3.      Pedestrian safety skills

4.      Interacts appropriately with unfamiliar people/strangers

5.      Plays with peers

6.      Can describe event/feelings

7.      Responds appropriately to questions

8.      Writing

9.      Listens to teacher

10.  Social skills at work

Researchers found parents prioritized skills where their child had deficits.  The only areas where this was not the case is with communication and academic skills.  If communication and academic skills were viewed as emerging, they were considered a priority.

What do you think?  Are these the skills you would make a priority?  Do you focus on teaching to your child’s strengths or areas of improvement?

Pituch, Keenan A., Green, Vanessa A., Didden, Robert, Lang, Russell, O’Reilly, Mark F., Lancioni, Giulio E., and Sigafoos, Jeff. (2011). Parent reported treatment priorities for children with autism spectrum disorders.  Research in autism Spectrum Disorders 5(1) 135-143.

Researchers:
Marcus Thomeer, Ph.D., Assistant Professor; Co-Director, Institute for Autism Research; Canisius College, Buffalo, NY
Christopher Lopata, Psy.D., Associate Professor; Co-Director Institute for Autism Research; Canisius College, Buffalo, NY

Purpose: The purpose of this randomized clinical trial is to evaluate the efficacy of an innovative multi-component manualized treatment on the emotion recognition skills and autism features of 7- to 12-year-old children with HFASDs.

Why Is This Study Needed?
Children with high-functioning autism spectrum disorders (HFASDs) are characterized by core impairments in social-communication including deficits in recognition (decoding) and display (encoding) of facial and vocal emotions and expressions. These impairments are considered detrimental to social competence and social reciprocity as deficits in the ability to accurately perceive nonverbal cues. Because nonverbal communication skills are a key intervention objective for children with HFASDs and improvements in nonverbal communication skills may increase success in social interactions, research is needed to identify programs that effectively teach facial and vocal emotion recognition for these children.

Study Methodology In Brief
The study employs a pretest and a posttest follow-up as well as a control group. The study will include 44 children with HFASDs (22 randomly assigned to the treatment group and 22 to a waitlist control).

Treatment is administered during 24 90-minute sessions (over 3 months) and active components include an interactive emotion-recognition software program, Mind Reading; in vivo rehearsal trials; and a structured behavioral reinforcement system. Each treatment session is manualized to ensure implementation is standardized, participants meet time parameters using and accessing areas of the Mind Reading program, content is prescribed, and fidelity is monitored and maintained.

Mind Reading is an interactive software program featuring 412 emotions organized into 24 emotion groups and by 6 emotion levels. It includes an Emotions Library, Learning Center, Games Zone, and Rewards Zone. In the current intervention, participants will complete emotion groups of up to 10 emotions a total of two times over the 24 sessions from Levels 1, 2, and 3 (comprising 98 of the “Top 100” emotions). Mind Reading also includes an internal reinforcement system in which children earn tokens for accurately completing questions in lessons and quizzes within the program (to be used in the Mind Reading Rewards Zone).

Given reduced treatment effects on non-Mind Reading outcome tasks in prior studies and need for practice of new decoding skills in naturalistic situations, this study includes in vivo rehearsal trials. Each 90-minute session is divided into five intervals. During each interval, a staff clinician displays a facial emotion and asks the participant to identify the emotion (decoding) and to display a specific emotion (encoding). To receive point-based reinforcement for the in vivo trial, the participant is required to accurately respond within five seconds. In vivo trials are conducted in a one-to-one format between the staff clinicians and child participants. To foster generalization, emotions used during rehearsal trials parallel those taught during Mind Reading instruction.

A behavioral reinforcement program is used to generalize skills (via in vivo trials) and increase on-task behaviors. During each of the five session intervals, participants earn points for identifying/displaying emotions during in vivo trials, following program rules, exhibiting prosocial behaviors, and refraining from negative social behaviors. Each child’s performance in the behavioral reinforcement system is reinforced at home by parents and participants must earn at least 75 percent of their points to receive a home reward. Collaboration with parents in determining rewards is used to foster parental attention to target emotion-recognition skills and behaviors.

Outcome measures consist of a direct child measure of emotion recognition skills, a parent rating scale assessing child emotion recognition and display skills, a parent rating scale assessing autism features, and parent and child satisfaction surveys.

A follow up will be done one to two months after the treatment to assess skill generalization and maintenance.

Researchers

Dr. Marcus Thomeer and Dr. Christopher Lopata are professors at Canisius College in Buffalo, N.Y. In 2009, they created the Institute for Autism Research at the college. The Institute for Autism Research conducts leading-edge research on autism spectrum disorders, and provides researchers and affiliated faculty with the facilities necessary to study and treat autism spectrum disorders in a collaborative manner.

In a recent literature review of  SSTGs in Research in Autism Spectrum Disorders, Catherine M. Cappadocia, M.A., and Jonathan A. Weiss, Ph.D. looked at the components that make SSTGs successful.

While different SSTGs used different curricula, most include direct instruction, modeling, and role playing.  Usually skills are taught in a progression from simple (greetings) to more complex (recognizing sarcasm).  Even SSTGs that do not advertise as using cognitive behavioral approaches (self talk, relaxation techniques, self monitoring, etc.) usually include these components.

Since most SSTGs include the elements above, what sets apart particularly successful programs? The keys to successful SSTGs, according to the review, were those that included:

• More overall intervention hours
• Parent training

Adolescents with Asperger Syndrome and high-functioning autism in these programs showed the most sustained improvement after intervention and the most generalization of skills. Groups with parent support groups or without parent participation did not show success with generalization or maintenance of skills.

Youth whose parents participated in training or simply received handouts about using and monitoring social skills outside of the group showed the greatest gains in social skills.

Reference

Cappadocia, M. Catherine and Weiss, Jonathan A. (2011). Review of social skills training groups for youth with Asperger syndrome and high functioning autism.  Research in Autism Spectrum Disorders, 5 (1), 70-78.

This study found that anxiety levels in people with ASD followed a similar pattern to anxiety in typical individuals but elongated and delayed.  Anxiety symptoms rose from toddlerhood to childhood, dropped during young adulthood, and rose again in older adulthood but not to the levels found during toddlerhood.  In this study toddlers were defined as 17-36 months, children as 3-16 years, young adults as 20-48, and older adults as 49-65.  Caretakers reported that children with ASD were more easily upset than older individuals with ASD.  This could be due to a delayed ability to manage emotions caused by anxiety.  The exhibition of more behaviors associated with anxiety in children with ASD may be coping mechanisms as these children do not yet have strategies for avoiding triggers.

Researchers suggest one reason anxiety symptoms decrease in young adulthood is that individuals are better aware of how to handle feelings of anxiety.  Also, individuals can avoid triggers and caretakers can avoid presenting stimulus that causes anxiety symptoms.  The decrease in anxiety symptoms could be due to greater use of behavioral interventions and medication use.

This study would have even greater validity if one group of individuals with autism were studied across the lifespan, though this would be nearly impossible to complete.  Parents should take comfort in knowing that behaviors associated with anxiety such as aggression and self-stimulation do decrease after childhood.

Davis III, Thompson E., Hess, Julie A., Moree, Brittany N., Fodstad, Jill C., Dempsey, Tim, Jenkins, Whitney S., and Matson, Johnny L. (2011). Anxiety symptoms across the lifespan in people diagnosed with Autistic Disorder.  Research in Autism Spectrum Disorders 5(1), 112-118.

Study: Outcomes of a Community Center-Based Program for Toddlers with Autism Spectrum

Researchers: Sam Odom, Ph.D., director, Frank Porter Graham Child Development Institute and Connie Wong, Ph.D., postdoctoral research fellow, Frank Porter Graham Child Development Institute

Purpose: To objectively evaluate a current center-based model of intervention so that families and professionals have access to practical information to make more fully informed choices in the education of young children with autism spectrum disorders (ASD).

Why Is This Study Needed?
Because more and more children with ASD are being identified and diagnosed earlier (before age 3), it’s important to establish evidence-based practices for toddlers with ASD. The current models of intervention are primarily home- and/or parent-based.

This study will look at the effects of center-based interventions for toddlers with ASD. The first goal is to compare outcomes of young children with ASD who attended an existing, comprehensive 20 hour/week, center-based toddler program to other young children with ASD in the same community who did not attend the program by examining program and school records. The second goal is to explore child and family characteristics along with intervention approaches affecting optimal outcomes. The third and final aim is to examine family perceptions on their satisfaction with early intervention services received, reasons for selecting specific early intervention programs, and perspectives on home-based and/or center-based intervention programs for toddlers with ASD by collecting data from a survey and through semi-structured interviews with families.

The results from the study will provide practical information to families in making educated treatment decisions for their toddlers recently diagnosed with ASD as well as to service providers in offering treatment recommendations related to center-based versus home-based programs and guiding intervention practices for individual children and families.

Study Methodology In Brief
The researchers will use records from a local Interagency Assessment Center, which conducts developmental evaluations for young children under the age of three suspected of having an ASD and runs early intervention programs serving the special learning needs of children 24 to 36 months of age with ASDs or suspected of having an ASD. The program includes early intervention services delivers within a classroom environment as well as support services for families.

Using records from the center, researchers will analyze and compare the developmental progress of children at the center compared to children who did not attend a center-based program.

The second part of the study will be a survey of parents of participants in Phase 1. Researchers hope to survey at least 70 families, equally divided between those whose children did attend the center’s program and those who did not attend a center-based program. The survey will ask questions about the child’s program and services to date and the parents’ reasons for selecting the specific early intervention programs and why they chose center- or home-based programs for their child, in addition to obtaining demographic information.

For Phase 3 of the study, the research team will conduct interviews with 30 to 40 families, again equally split, to get more in-depth information on parents’ decision on what intervention programs and services they chose and why and the results of those decisions.

Research Team
Dr. Samuel Odom is the director of the Frank Porter Graham Child Development Institute and currently the principal investigator on several federal grants related to evidence-based practices and the treatment of autism spectrum disorders. He is also the principal investigator of an Institute of Education Sciences postdoctoral training grant in which he currently mentors Dr. Wong.

Before coming to FPG, Dr. Connie Wong was an assistant professor of early childhood special education in the Department of Teacher Education at Cleveland State University and was the principal investigator of an Autism Speaks-funded intervention project targeting the facilitation of joint attention and symbolic play in young children with ASD through classroom teachers. Furthermore, she travels regularly to California from FPG and collaborates regularly with Mr. Akstinas and several of the Orange County (Calif.) Department of Education school systems.

Mr. Mark Akstinas is a school psychologist at the Interagency Assessment Centers (IAC) who facilitates the transition meetings to the IAC program as well as out to the preschool services with the various local school districts. He also presented the preliminary study of the IAC child outcomes with Dr. Wong at the International Meeting for Autism Research.

Learn more about Autism NOW at http://www.facebook.com/AutismNowCenter.

Miranda rights are meant to keep individuals from incriminating themselves.  Past studies have shown that adolescents, people with intellectual disabilities, and people who have received special education services have a difficulty understanding Miranda rights.  Members of these groups are more likely to offer false confessions.  This data paired with the social deficits of ASD make people on the spectrum quit likely to have a difficult time understanding Miranda rights.

What can you do?  Teach your child or student how to interact with law enforcement.  Help them understand what to do if arrested or approached by law enforcement.  This is a worst case scenario that hopefully you will never need to address, but advance preparation makes for peace of mind.

Salseda, Lindsay M., Dixon Dennis R., Fass, Tracy, Miora, Deborah, and Leark, Robert A.  An evaluation of Miranda rights and interrogation in autism spectrum disorders. Research in Autism Spectrum Disorders 5(1), 79-85.

Autism is known as a “fad magnet” because of the plethora of treatments available to treat the condition (Jacobson, Foxx, & Mulick, 2005). Because of the varying levels of believability and evidence supporting many of these treatments, there is a need to be skeptical about any particular autism intervention until some minimal level of quality evidence exists showing that the particular treatment has demonstrated positive results. Most professionals adhere to the methods of science and scientific inquiry as the standards against which the quality of treatment evidence is judged.

Ideally, by universally adhering to common criteria for acceptable empirical evidence, professionals across disciplines would study a phenomenon and all arrive at the same conclusion as to its “truthfulness” or veracity. A conclusion about, say, the efficacy of an autism treatment would be that much more powerful given the adherence to the scientific method by professionals from varying disciplines all examining the same treatment from different perspectives.

Auditory Integration Therapy
How professionals from different disciplines examined Auditory Integration Therapy (AIT) and made a judgment about whether AIT should be promoted to consumers illustrates just such a professional model.

Researchers have reported that persons with autism spectrum disorders (ASD) show higher incidences of sensory processing difficulties than the general population (e.g., Baranek, Foster, & Berkson, 1997; Gillberg, et al., 1990). Some of these sensory problems consist of abnormal responses to auditory stimuli, which could translate into learning and behavioral challenges (e.g., Dahlgren & Gillbert, 1989). As a result, Berard (1993) and others have proposed a therapeutic approach aimed at reducing or eliminating auditory sensory processing challenges.

Berard, a French otolaryngolosit, developed the method in 1982 (Berard, 1993). Although there are variations within the field of auditory integration therapies (e.g., Samonas, 2010; Tomatis, 2010), the general method consists of the recipient listening to music that has been digitally modified in some way. The music is often played through headphones, with multiple sessions across several days (e.g., Dawson & Watling, 2000). The music is altered in some fashion, such as by dampening or limiting the peak frequencies, randomly varying the high and low frequencies on a random basis, or varying the volume. How it is modified depends upon the needs and challenges of the recipient.

The advocates of AIT claim that there is scientific evidence to support this therapeutic approach. Indeed, all of the websites devoted to AIT have references to research studies that purportedly confirm that AIT is causally related to improvements of behavior and learning. For example, at the AIT Institute (2010) website, there can be found a list of 23 research studies that purportedly support the effectiveness of AIT.

One of the first public criticisms of AIT was provided by the American Academy of Pediatrics (AAP; 1998), which published a policy statement regarding AIT and Facilitated Communication. In unambiguous terms, AAP found that AIT had little to no quality research proving it was effective with persons with ASD. AAP concluded that its use was “not warranted.”

Two years later, Dawson and Watling (2000) reviewed the literature that existed at that time. They reviewed five studies, published between 1994 and 1997. Three of the five included a control condition. Two of these three studies found improvement in participants in both of the conditions, thus no causal relationship between AIT and improvement in participants could be believed. One study (Rimland & Edelson, 1994) found improvements made by only the participants in the AIT condition, but there was a design problem in which the researchers didn’t do matching of subjects during pre-intervention.

Then, in 2003, the American Speech-Language-Hearing Association (2003) weighed in on the controversy. After reviewing the existing literature published on AIT, this organization adopted a policy statement stating that there was no evidence that AIT improves the behavior of persons who use this treatment. Furthermore, the policy suggests that an ASHA member could be found in violation of the Code of Ethics if that member chose to treat an individual with AIT.

The evaluation of AIT continued. Mudford and Cullen (2005) conducted a thorough review of both the conceptual underpinnings of AIT, as well as the research existing up to that date. They concluded that both the philosophy and logic of AIT was weak, and that the research base was both thin and poorly designed, with no obvious causal relationship proven between AIT and any improvement in participants.

The most recent review of the AIT group of therapies was conducted by Sinha, Silove, Wheeler, and Williams (2006). These authors limited their search of the research to studies that used randomized controlled trials (recognized as the preferred experimental design when testing treatment efficacy; e.g., Chambless & Hollon, 1998) that included persons diagnosed with ASD. They discovered a total of six studies that met their inclusion criteria. Of these six, the authors of three studies reported no benefit of AIT over the control conditions. The three other studies showed improvement as defined by changing scores of the Aberrant Behaviour Checklist. However, this particular checklist has questionable validity, so the strength of this positive finding is in question. Sinha and colleagues concluded that there was, at that time, no evidence sufficiently powerful to support the belief that AIT was empirically proven to be effective.

Also in 2006, the AAP once again reviewed the existing literature and reexamined its policy statement concerning AIT. And once again, the organization found the research base lacking and confirmed its initial policy against recommending AIT be used. AAP updated its policy a second time in 2010 and left it unchanged.

Even some proponents of AIT recognize the limitations of the research base. After each study listed at the AIT Institute website (2010), a comment from the Institute critiquing the strengths and weaknesses is posted. Of the 23 studies listed, only one study suggested any positive findings of AIT using an acceptable research design. The remaining 22 studies were considered problematic due to a variety of potential methodological problems, such as small number of subjects, no control group, or the use of unreliable survey data (AIT Institute, 2010).

Conclusion
Autism treatment is fraught with strategies and tactics that vary in terms of their quality and evidence of effectiveness. The standards of science and the scientific method are the models that should be followed when critiquing autism treatment to determine if a particular therapy has evidence of effectiveness.

In the case of AIT, there is no empirical base demonstrating efficacy. This conclusion is made even more compelling by the process that was used. Over a period of 12 years, investigators from around the world and different disciplines read the extant literature and evaluated that research against criteria exemplified by good science — use of quality experimental design, operational definition of important terms, adequate reliability and validity, and replication of results. These independent researchers arrived at the same conclusion again and again, finding no compelling evidence that the use of AIT results in any significant improvement of the recipient. Furthermore, organizations (ASHA; AAP) that had professional interests in this therapeutic strategy independently studied the research existing on AIT and, finding it weak, issued formal policy statements explaining to its constituents how the evidence supporting AIT was not compelling and should not be considered an effective therapy.

There are still some who continue to use AIT. Green, Pituch, Itchon, Choi, O’Reilly, and Sigafoos (2006) conducted an Internet survey of parents of children with ASD, to learn what treatments exist and which ones parents admit using. The authors categorized the treatments by type, such as medications, educational/therapy, and alternative therapies. The results showed that almost half of the respondents indicated they were using a “physiological”–based treatment, which included specific treatments such as sensory integration, conductive education, and auditory integration (AIT). AIT was the third-most cited treatment in this particular category.

Despite continuing use, AIT presents an interesting example of how, by adhering to the methods of science and understanding the definition of quality evidence, the professional communities can speak with one voice about a particular treatment in question. There are many other therapies currently being used for which we could apply the same standards of evidence. Hopefully, this will be done so that, in the future, consumers will be able to select from a menu of treatments that all have an empirical basis of support.

References

AIT Institute (2010). Reviews of 28 clinical studies on AIT – Auditory Integration Training (Berard AIT). Retrieved September 20, 2010 at www.aitinstitute.org/ait_clinical_studies.htm.

American Academy of Pediatrics (2010). Auditory integration training and facilitated communication for autism policy statement. Retrieved September 20, 2010 at http://aappolicy.aappublications.org/cgi/content/full/pediatrics;102/2/431.

American Speech-Language-Hearing Association (2003). ASHA adopts AIT policy. Retrieved September 20, 2010 at www.asha.org/Publications/leader/2003/030805/030805c.htm.

Baranek, G. T., Foster, L. G., & Berkson, G. (1997). Sensory defensiveness in persons with developmental disabilities. Occupational Therapy Journal of Research, 17, 173-185.

Berard, G. (1993). Hearing equals behaviour. New Canaan, CT: Keats Publishing.

Chambless, D. L., & Hollon, S. D. (1998). Defining empirically supported therapies. Journal of Consulting and Clinical Psychology, 66(1), 7-18.

Dahlgren, S. P., & Gillberg, C. (1989). Symptoms in the first two years of life: A preliminary population study of infantile autism. European Archives of Psychiatry and Neurological Sciences, 238, 169-174.

Dawson, G., & Watling, R. (2000). Interventions to facilitate auditory, visual, and motor integration in autism: A review of the evidence. Journal of Autism and Developmental Disorders, 30, (5), 415-421.

Gillberg, C., Ehlers, S., Schaumann, H.,  Jakobsson, G., Dahlgren, S. O., Lindblom, R.,

Bagenholm, A., Tjuus, T., & Blinder, E. (1990). Autism under age 3 years: A clinical study of 28 cases referred for autistic symptoms in infancy. Journal of Child Psychology and Psychiatry, 31, 921-934.

Green, V. A., Pituch, K. A., Itchon, J., Choi, A., O’Reilly M., & Sigafoos, J. (2006). Internet survey of treatments used by parents of children with autism. Research in Developmental Disabilities, 27, 70-84.

Jacobson, J. W., Foxx, R. M., & Mulick, J. A. (2005). Controversial therapies for developmental disabilities: Fad, fashion, and science in professional practice. Lawrence Erlbaum Associates, Inc.: Mahwah, New Jersey.

Mudford, O. C.,  & Cullen, C. (2005). Auditory integration training: A critical review. In J.W. Jacobson, R. M. Foxx, & J. A. Mulick (Eds.), Controversial therapies for developmental disabilities: Fad, fashion, and science in professional practice. Lawrence Erlbaum Associates, Inc.: Mahwah, New Jersey.

Rimland, B., & Edelson, S. E. (1995). Brief report: A pilot study of auditory integration training in autism. Journal of Autism and Developmental Disabilities, 25, 61-70.

Samonos (2010). Retrieved September 20, 2010 at www.samonas.com/index.html

Sinha, Y., Silove, N., Wheeler, D., & Williams, K. (2006). Auditory integration training and other sound therapies for autism spectrum disorders: A systematic review. Archives of the Disabled Child, 91, 1018-1022.

Tomatis (2010). Retrieved September 22, 2010 at www.tomatis.com/index.php?lang=2.

∙ Playful obstruction- Getting in the way of your child is a good way to get back and forth interactions.  For example, if your child wants a book on a shelf, you can stand in front of it.  Your child will need to ask you to move or you can prompt them to ask the question.

∙ Playful construction- When your child is playing with something alone you can change it into a social interaction.  For example, if your child is sorting blocks into groups you can begin to build a house.  Ask the child for help in building and ask for various blocks.  You can even ask your child to describe what you are now doing together.

∙ Playful negotiation- When your child wants to do something or have something, ask questions and make comments to encourage long back and forth communication.  For example, if your child wants to go on the swing at the playground you can comment on the swing and ask questions such as “What does swinging feel like?”
Remember these techniques are used in a fun way.  Be playful!  Smile and joke!  Over exaggerate your gestures and questions to help your child pick up the social cues that this is play.  Two other techniques to use when playing are time delay and prompting.

∙ Time delay- Allow time to past before prompting your child.  Give your child time to process your question, request, or statement.  Waiting often let’s your child know that you expect a response.

∙ Prompting- An encouraging nod or smile during time delay can be used to prompt your child to respond.  Successful prompting goes from least to most.  For example, if you ask your child to hand you a blue block the first level of prompting would be to wait and give an encouraging look.  Next you would point to the block.  You can prompt by modeling getting the block and ask your child to do the same.

Have you tried these techniques?  Did you find them useful?

References

Leach, Debra and LaRocque, Michelle. (2011).  Increasing social reciprocity in young children with autism.  Intervention in School and Clinic, 4, 150-156.

The strategies taught to parents include:

1.      Materials are prepared in advance and can be used independently by the children

2.      Each part of the activity involves both children

3.      Each child’s role is explained before the activity begins.

4.      One of each item is available so the children have to share.

5.      Parent stands or sits behind the children.

6.      Parent prompts the peer to prompt the child with autism

7.      Parent helps the peer follow directions and prompts while giving appropriate praise.

8.      There is only one of each type of activity per play date.

9.      Parent avoids or removes distractions.

10.  Parent selects an activity that is very enjoyable to both children.

Prior to parents using the play date strategies, the child with autism exhibited low levels of reciprocal play.  While using the play date strategies, amount of interactive play increased.  Unfortunately when parents stopped using the strategy, children returned to low levels of interactive play.  While the idea of parents facilitating play dates in the home is socially valid, it did not have a lasting effect on children.  The strategies are still useful for parents to make play dates more fun for their child with autism and a non-disabled peer.

What are your tips for making play dates a success?

Jull, Stephanie and Mirenda, Pat. (2011). Parents as play date facilitators for preschoolers with autism. Journal of Positive Behavior Interventions, 13(1) , 17-30.

On October 14, 2010, the United States Food and Drug Administration (FDA) released a press statement that it had determined that over-the-counter chelation remedies are considered unapproved drugs and devices, and that unproven claims about their effectiveness will be considered a violation of federal law. Specifically, the FDA targeted eight companies that promote chelation therapy as effective at solving numerous health problems. Although the FDA has approved chelating products only for lead poisoning and iron overload, these particular companies market chelation for problems other than those two metals, and also market screening tests that claim to detect the presence of heavy metals in the body.

This unambiguous and welcomed report provides an opportunity to review the history of chelation therapy, its use as an autism treatment, and how the methods of science and adherence to evidenced-based treatment remain the gold standard that service providers must strive to maintain.

Generally speaking, chelation therapy involves administering (usually by injection) ethylenediamine tetraacetic acid (EDTA; American Heart Association, 2010). Essentially, EDTA chelates (binds) with heavy metals in the body, and then excretes them in the urine. This therapy is frequently used in the case of heavy metal poisoning, such as with lead or mercury. A chelation treatment could last two to four hours and costs between ($50-100), with a patient receiving five to 30 treatments in the first month (American Heart Association, 2010).

Chelation therapy has been proposed for several medical conditions, including cardiovascular diseases (such as atherosclerosis), Parkinson’s disease, Alzheimer’s disease, macular degeneration, and autism spectrum disorders (ASD). In 2007, the Centers for Disease Control and Prevention reported that approximately 111,000 people aged 18 years and older then used some form of chelation therapy (National News, 2010).

The argument for why chelation therapy may be helpful for persons with ASD stems from the use of mercury in vaccines (Holmes, 2010). Mercury, as well as other metals, has been shown to be toxic to humans in high levels. Thimerosal, which contains mercury, was used in vaccines given to young children. Thus, the argument goes that ASD could be due in part to the presence of heavy metals in the body. The solution would be to eliminate them from the individual via chelation.

When considering whether chelation could be an effective treatment for autism, one must consider three questions:

1. Can autism be caused by toxicity to metals?

   Answer: There is no evidence that persons with ASD have significant levels of heavy metal in their bodies. Given the small amount of Thimerosal in vaccines, the fact that Thimerosal was eliminated from vaccines several years ago, and the continuing increasing incidence of autism, the believability of this premise is quite weak.

2. Is chelation dangerous?

   Answer: Chelation has been shown to be potentially dangerous to humans. The American Heart Association (AHA; 2010) notes that chelation can result in kidney failure, bone marrow depression, shock, low blood sugar, convulsions, cardiac arrhythmias, and respiratory arrest. The FDA (2010) warns of potential dehydration, and the AHA, FDA, and Brown, Willis, Omalu, and Leiker (2006) all report the potential for death by undergoing chelation therapy. It is clearly a risky treatment.

3. Is chelation actually effective in improving autistic symptomology?

   Answer: Chelation therapy lacks a foundation of quality research showing effectiveness in improving any illness or condition. The effectiveness of any chelation intervention is currently unsubstantiated. The FDA and the AHA have official policy statements against chelation therapy having scientific evidence of effectiveness. The  studies that exist show a lack of effect. For example, in the 1960s, a small study was conducted testing whether or not chelation therapy could improve cardiovascular disease. However, after two participants died and there was no obvious improvement in the others, the study was terminated (AHA, 2010). In other research, EDTA was no more effective than placebo sugar pills (AHA, 2010). The AHA Clinical Science Committee has reviewed the available literature on the use of chelation in the treatment of arteriosclerotic heart or blood vessel disease and finds no scientific evidence to demonstrate any benefit. And along with the AHA and FDA, numerous other organizations have come out against chelation therapy, including the American College of Physicians, the National Heart, Lung, and Blood Institute, the National Institutes of Health, and the American College of Cardiology.

In one sense, the preponderance of professional organizations all supporting the same conclusion about chelation is very compelling and powerful. If there is one fad treatment that has little to no empirical evidence to support its use, it seems to be chelation therapy. It’s inspiring to note that these diverse professional organizations have looked at the quality of the science behind chelation therapy and all have agreed on both the necessary criteria for empirical evidence, and that chelation therapy is found wanting in that regard.

However, chelation therapy is not going away quietly. As recently as this year, Senel (2010) surveyed Turkish parents of children with ASD, and chelation therapy was mentioned as one of the top five frequently used complementary and alternative medicines. The American College for Advancement in Medicine (ACAM; dedicated to “… educating physicians and other health care professionals on the latest findings and emerging procedures in complementary, alternative, and integrative (CAIM) medicine”) has launched a certification program for chelation therapists.

Golnik and Ireland (2009) surveyed physicians and found that many of the respondents would not rule out using CAIM therapy with their patients. Although 61 percent of surveyed physicians admitted they would discourage the use of chelation, still 12 percent would accept its use, and 26 percent reported they were not knowledgeable enough to make a recommendation. Sadly, 10 to 40 percent of the physicians surveyed acknowledged that they would accept a family’s use of CAIM treatments even those these treatments were not yet thoroughly tested for effectiveness or safety.

However, except for the irreducible few believers, chelation therapy has been debunked. Science has done its job and exposed this type of therapy as the dangerous fad it is. The methods of science, and the standards for empirical evidence with which behavior analysts are familiar – operational definitions, controlled experimentation, measurement reliability, and replication – have been used to discover the facts as they are known about chelation therapy. Other investigators can apply these same criteria of evidence and use the scientific method to investigate other treatments that have the aura of effectiveness, but in reality have not yet been fully vetted.

References

Brown, J. J., Willis, T., Omalu, B., & Leiker, R. (2006). Deaths resulting from hypocalcemia after administration of edetate disodim. Pediatrics, 118(2), e534-e536. doi: 10.1542/peds.2006-0858.

Golnik, A. E., & Ireland, M. (2009). Complementary alternative medicine for children with autism: A physician survey. Journal of Autism and Developmental Disorder, 39, 996-1005.

Green, V. A., Pituch, K. A., Itchon, J., Choi, A., O’Reilly, M., & Sigafood, J. (2006). Internet survey of treatments used by parents of children with autism. Research in Developmental Disabilities, 27(1), 70-84.

Holmes, A. S. (2010). Autism: Treatments, chelation of mercury. Retrieved October 31, 2010 at www.healing-arts.org/children/homes.htm.

Kemper, K. J., Vohra, S., & Walls, R. (2008). American Academy of Pediatrics. The use of complementary and alternative medicine in pediatrics. Pediatrics, 122(6), 1374-1386. doi: 10.1542/peds.2008-2173.

Natural News (2010). FDA attacking chelation therapy for autism. Retrieved October 20, 2010 at www.naturalnews.com/030069_chelation_autism.html.

Senel, H. G. (2010). Parents’ views and experiences about complimentary and alternative medicines for their children with autistic spectrum disorder. Journal of Autism and Developmental Disorders, 40(4), 494.

United States Food and Drug Administration (2010). FDA issues warnings to marketers of unapproved “chelation’ products. Retrieved October 26, 2010 at www.fad.gov/NewsEvents/Newsroom/PressAnnouncements.

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Inclusion can provide our kids with social models, help them to learn in a more natural setting how to interact, and allow them to show their abilities and make real friends.  Still, it is rare that dropping a person into a typical environment will be all that is needed.  Unless the staff is naturally talented, committed and have support to help them work with our kids, inclusion efforts fail dramatically.

Given the risks and possible rewards of inclusion, what can we do to make the most of these opportunities?  I will talk about supporting inclusion for people with severe, moderate, and mild challenges.

At a basic level, most anyone can be included in some activity.   Assessment nearly always uncovers moments in the day of genuine interaction.  Think about those moments and figure out how to recreate and expand on them, bringing them to different contexts, including school settings.  A child who perseverates may have some nice moments of interaction when we join that activity, become part of it, and gently and gradually introduce small, playful variations on that activity.  Over time, that same joint activity can be moved to other venues and other objects, eventually including school.

The next steps expand these interactions to fit them into what we are doing in class with typical students.  A math lesson for the typical kids in understanding greater than, less than and equal may center, for the child with challenges, on ‘more than I want’, ‘not enough of what I want’, and ‘enough’ of things she likes.  Another idea could be to use small figurines, perseveratively played with, may turn into playing together, and finally playing that reflects the book that class is reading, and then play resembling the plot of the book.    This is not an overnight process, but it can occur over time.  When staff have adequate support time to reflect and think about how to move forward, such things are certainly possible and often attainable.

For people with moderate challenges, perhaps verbal but active, impulsive, and not well connected with peers, this same process can be used.  It is often helpful to actively comment on the situation of the moment to slow things down and make sure that everyone is more aware of what is going on.  A good playground aide might walk with the child as he paces, pick upon things along the path that interest the child, use those for play or games of hiding stuff, building stuff, and the like, and talk about the process aloud as other kids are drawn to the adult attention.

Inclusive design might include choreographing class performances to be active (rather than standing still) with simple direction to the movements that the child can better follow.  Academics always bear explicit demonstration.  A lesson in measurement might have the child help, stretching and cutting several strings to the length of a table, then lining them up and showing how they are different lengths.   Writing assignments can use props to play out possible scenarios that typical kids can jot down, allowing co-creation of stories.  This creativity also demands supported reflective time for staff.

For more mildly challenged students, their relatively typical appearance lulls staff into expecting typical processing, responses, and performance.  Staff often need more help in facilitating the student to have an ongoing flow of non-verbal connection and interaction with staff and then peers, something that the typical kids are doing even though we think of them as ‘independent workers’.  This flow of interaction and connection forms the basis for the child’s resiliency and ability to tolerate more challenging concepts and critical thinking.  Moreover, the child often expects perfect ‘normalcy’, requiring support to remember that nothing is ‘normal’, and the important thing is to remember that everything comes out different than what we expect and our job is to figure out what we want to do about that.

These are a few ideas.  When there is not adequate staffing or adequate support to staff, it is unwise to force inclusion.  Still, while challenging to do well, many of the best outcomes for students along the entire range of severity are maximized with the use of inclusive settings at home and in the community.

What are strategies you have found helpful with inclusion?

Mike: Peter, can you believe it has been nine years since we launched OAR?  It seems like just last weekend when Jim Sack and I met you in Baltimore to invite you to become chairman of OAR’s Scientific Council. Your first job was to create the Council and recruit the right people to match OAR’s mission. What were you looking for when you started, and how would you assess the role of Council through OAR’s first nine years?

Peter: When we started, I wanted to find individuals who understood not only research but also the application of research.  I was looking for an academic orientation coupled with a real-world perspective. And that is what I found in every member of the Council. Over the years, the Scientific Council has functioned extraordinarily well, from our initial humble beginnings when we were reviewing four or five proposals to today when we review over 100. What the Council members bring is a unique mix of backgrounds, history, and expertise that are put to use to find the proposals that will bring useful research to families, educators, and other researchers. My favorite day of the year is when we can get together and talk about grants.

Mike: I couldn’t agree more. Besides being unselfish of their time and expertise, the members of the Council are some of the most enthusiastic fans of OAR. These are professionals with demanding, full-time jobs running schools and programs, teaching, researching, writing, and more. What is it about OAR that gets them so engaged in its mission?

Peter: It’s OAR’s core mission: “Research designed to change people’s lives.” In the past nine years, funding for autism research has focused on biomedical and ideological topics, research du jour, so to speak. That makes OAR’s attention to applied research funding critically important. And it’s that attention that gets the Council so actively enthusiastic and involved.

Mike: As OAR has grown and matured since 2001, how has the Scientific Council and its view of OAR evolved?

Peter: When OAR started in 2001, we asked prospective members to join us based on a wing and a prayer. And these were high-powered people who were willing to take us on. They recognized the need for what OAR wanted to do. Not a single person turned us down. Today, OAR’s impact and areas of expertise has expanded, and the Scientific Council is very proud to be a part of that work and OAR’s mission.

Mike: As you know, we just had some fun coming up with our Top 10 Accomplishments. Funding research and providing quality resources like the Life Journey through Autism Series are kind of “no brainer” winners because they’re so integral to OAR’s mission. Those things aside, what is the OAR research and programs highlight, research study, or contribution to the cause that stands out most for you and why?

Peter: Because of the funding OAR has provided, we now have a half dozen studies that have received much higher levels of funding from the National Institutes of Health, the National Institute of Mental Health, and other federal agencies. When you look at the overall process of research funding, that “leg up” is invaluable. Right now, you can get $500,000 in funding from the federal government or $30,000 in funding from OAR, but your chances of getting that $500,000 go up dramatically if you start out with OAR funding. That we have been able to do this is something to be quite proud of.

Mike: We’ve worked together for so long that you know what I think before I open my mouth. I’ve always seen OAR’s most important role as one of providing quality information that helps persons with autism, their parents, brothers and sisters, teachers, and others successfully contend with the challenges of autism. Regardless of whether you agree with my premise or not, how would you rate OAR’s information programs? Where do you see OAR going in this area in the future?

Peter: OAR’s information programs are critical as a bridge from research to practice that hasn’t existed before. Too often before OAR came along, the information that resulted from research studies sat on shelves getting dusty and never made it into the hands of people who could have used it. Today, thanks to OAR, that’s not true.

Mike: We’ve now funded 118 small or pilot studies in nine years. Do you have a favorite, and are there any that have had a significant impact in the research field or in translation to practice?

Peter: Hmm, honestly, I don’t have a favorite. And I’m not trying to be diplomatic or politically correct. They all have different impacts in different areas. I’m more interested in ones that have to do with my field of adolescents with autism. But the ones that have the most impact are those I spoke of before—that go on to receive large amounts of federal funding. The one that comes to mind is the study done by Laura Anthony, Ph.D., and Lauren Kenworthy, Ph.D., in 2007. They developed an intervention to help children with Asperger Syndrome/High-Functioning Autism (AS/HFA) improve their flexibility in school. In 2010, they received $775,000 from NIH for an expansion of the study. Absent OAR’s initial funding, a highly promising intervention would probably have gone unnoticed, unfunded, and ultimately, unavailable to the autism community. It’s those kinds of grants where we can make our mark.

Mike: It’s been an interesting ride with OAR. Do you see OAR’s mission and role continuing to be viable and expanding, or is its future more limited and self-contained?

Peter: Oh, no doubt that it’s viable and expanding. The diversity that is autism is going to require the kind of research OAR funds to continue. In fact, I think that biomedical research will complement what we’re doing as it finds different types of autism. Ideally, in the future we’ll be able to target interventions, and direct our funding, to better identify which subset of individuals on the spectrum best responds to which interventions.  In other words, an important collaboration between biomedical research and OAR’s applied research will be the identification of responders versus nonresponders to intervention.

Mike: I asked you this during our first trip and again several times during our time together since. Assuming OAR received a gift of $1 million for Christmas, what research would you seek to do or what program to serve persons with autism would you most like to see OAR undertake?

Peter: That’s an easy question. I’d invest in research to explore teaching individuals across the age range with autism to live in the community. Why across the age range? Adapting to a community setting is something that must start early on and then build on skills learned as individuals get older. Individuals with autism need to have a diverse set of competencies that they can use outside the classroom. Just because someone has a high I.Q. doesn’t mean he or she is high-functioning. What I’d like to be able to give all individuals with autism is the chance to live as happy, productive, and involved lives as possible.

Mike: As we get ready to celebrate the arrival of the New Year, what resolutions would you suggest for OAR?

Peter: I think we need to resolve to keep on doing what we’ve been doing while spreading the word about what we do to a wider segment of the population. OAR is the best-kept secret in autism and getting the word out will enable OAR to make a much bigger difference.

Mike: Peter, thanks for the chat. Good luck in your new job and important work. Most important, thanks again for all you’ve done for OAR most recently, but more important for persons with autism throughout the almost 30 years of your professional life.

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The ivory-billed woodpecker (Campephilus principalis) was last known to exist in 1944. Unexpectedly, in 2004, it was purportedly seen near Brinkley, Arkansas. This claim resulted in a scientific expedition that produced an inconclusive video that was used to confirm the bird’s reemergence from extinction, an article in Science magazine extolling the excitement that the bird was indeed back, and a worldwide fascination towards a species supposedly extinct but now here again. Yet, despite over five years of searching at a cost of over $10 million, there remains no physical proof that the woodpecker is in fact alive. (Radford, 2009)

At a 2004 Florida conference about treatment for autism spectrum disorders (ASD), a medical doctor spoke to a group of parents about electromagnetic fields and their impact on autism. The doctor asked one parent if she used a cell phone, to which the parent replied yes. With a grand wave of the hand, the doctor pronounced, “Throw it out!” advocating for the unproven belief that the electrical energy emanating from cellular phones was somehow either responsible for or negatively impacting the symptoms of this neurological disorder.

When confronted with claims that are presented as true, such as the doctor’s belief, how can we make a reasonable evaluation to ascertain, as confidently as possible, whether the claim has merit? This fundamental question impacts virtually all areas of our society. Claims abound – from alien abductions and the existence of the Loch Ness monster to eating wild boar meat to cure autism. How can we “separate the wheat from the chaff” in a way that both prevents the acceptance of wildly suspicious claims that have no support and permits adoption, with some level of certainty and comfort, of claims that are likely to in fact be true?

The Scientific Method
The best way known to evaluate claims is to adopt the intellectual discipline of science and the scientific method of investigation. This methodology involves carefully defining terms, conducting controlled experiments when possible, practicing the law of parsimony, and adopting “philosophic doubt” or skepticism. (e.g., Cooper, Heron, & Heward, 2007) Although all of the methods of science are important, practicing skepticism is crucial to protecting oneself from believing unsubstantiated claims. Though the American public views science’s effect on society as positive (in a recent survey, 84 percent of respondents said that the effect of science was mostly positive and scientists were ranked as the third-most contributing profession to society, after the military and teachers; American Association for the Advancement of Science, 2009), the continued adoption of unproven beliefs, claims, and bizarre treatments (particularly in the field of autism) remains strong, suggesting that although science is lauded, skepticism — and scientific thinking in general — is not widely practiced.

Skepticism is not a view that promotes the disbelief of every truth or claim. (Normand, 2008) Merriam-Webster Online (2010) defines it as “an attitude or doubt or a disposition to incredulity either in general or towards a particular object” (emphasis added). The word is from the Greek “skeptikos,” meaning “inquirer” or “investigator.” (DiCarlo, 2009) Pigliucci (2009) defines skepticism closer to the original Greek meaning as the suspension of judgment (either to adopt or reject) until sufficient evidence is examined.

Kurtz (2010) stresses this perspective with his discussion of “skeptical inquiry,” an approach that promotes the examiner to “…seek, when feasible, adequate evidence and reasonable grounds for any claim to truth in any context.” (p. 21, as quoted in Normand, 2008) Claims of all kinds should be, before adoption or rejection, examined for the amount and quality of evidence that supports them. Thus, if there is a particular treatment for which there is valid scientific evidence for support, that treatment should be adopted and viewed as evidenced-based. However, when a claim is not supported by evidence or when the evidence is weak and of poor quality (such as solely relying on the opinion of the claim maker), rejecting the claim or position is wise. Simply put, skepticism is the position of objectively evaluating, by looking for empirical evidence, the validity of any claim of fact, and basing adoption or rejection on the evidence (or lack thereof; Normand, 2008).

This skeptical attitude, and the corresponding investigatory approach, reduces the possibility of adopting as true a claim (or treatment) that may not be true. As is often said, extraordinary claims could be true, but a skeptical approach towards them would require extraordinary evidence and evaluation of that evidence. To reiterate, a skeptical thinker does not reject all claims; nor does s/he accept all claims as true. Rather, the position of a skeptical thinker is one of assessing the validity of the evidence before rendering a decision. The type of evidence is important, and there is an acknowledgement that there exists quite a bit of variation and debate regarding what evidence constitutes “valid” evidence (Zane & Hanson, 2008). But there is general agreement that the methods and criteria used by science is the most acceptable perspective to take.

Adopting Skepticism
Normand (2008) smartly acknowledged that the literature provides little specification on exactly how to behave skeptically. The following suggestions offer some steps to take to become a “scientific skeptics” (a termed coined by Normand; those who think and act skeptically).

1.   Study and adopt the methods of science, scientific investigation, and skepticism, as described by numerous textbooks that exist on these subjects. (e.g., Cooper, Heron, & Heward, 2007; Sagan, 1996) The scientific perspective and method of inquiry will inoculate against the reflexive acceptance of claims that are baseless.

2.   Require that anyone making extraordinary claims provide extraordinary evidence to substantiate those claims. For example, when the practitioners of craniosacral therapy assert that they do not even need to touch the client’s body in order to change the course of the cerebral spinal fluid (Zane, 2005), they should be required to present evidence that this is in fact true. When leading proponents of Relationship Development Intervention, assert that, “The RDI Program is for every age group and for every range of severity, including those who are severely affected by autism” (Connection Center, 2005), they should be required to present the evidence that backs up this extraordinary claim.

3.   Don’t be gullible – do not accept claims without evaluation. Accepting all claims is not only intellectually dishonest, but potentially dangerous and fatal. (Pigliucci, 2009) For example, promoting holistic remedies for curing AIDS will likely result in the unnecessary deaths of persons with the disease. Gullibly accepting the false claim that vaccines cause autism may lead to parents not vaccinating their children, and such an action puts children at risk for serious diseases. Furthermore, accepting claims without critical evaluation will result in significant costs in money, time, and emotion. (Zane, Davis, & Rosswurm, 2009) Gullibility is the opposite of skepticism, so demanding evidence of truth will naturally protect one from being gullibly accepting every claim.

4.   Behave according to this rule:  “In science, keeping an open mind is a virtue — just not so open that your brains fall out.” (James Oberg; Sagan, 1996) In other words, be intellectually willing to accept any claim, but always seek evidence and proof of truth before acceptance is granted.

5.   Find contexts that promote skepticism. For example, attending meetings of other skeptics and listening to podcasts such as The Skeptics Guide to the Universe will prompt and reinforce skeptical behavior. (Loxton, 2009) Consider following some of the suggestions in What Do I Do Next, a call for action on the part of all skeptics. (Loxton, 2009)

Antiscience, pseudoscience, and bizarre claims continue to gain influence in the public, and this state of affairs is partly due to the lack of understanding of the nature of science. (Lamal, 2009) Skepticism is a key concept in understanding how to assess the level of believability of something. Pigliucci (2009) goes so far as to believe that there is an ethical requirement to be skeptical and question the veracity of claims. He asserts that everyone must seek the truth and this requires a “baloney detection toolkit.” (Sagan, 1996) This set of analytic and decision-making procedures and rules allow us to, as best as we are able, ascertain what might be true and what does not have evidence of believability. The adoption of healthy skepticism will result in a more informed public, more informed decision making about claims and treatments, and have the overall effect of the promotion of truth and validity to protect us from extraordinary claims that have little reason to be believed.

References:

American Association for the Advancement of Science (2009). Retrieved August 20, 2010 at http:/people-press.org/report/528/.

Connections Center (2005 August). Myths & facts about the RDI® program, part 5,fact: The RDI program is for those severely affected by autism, too! Going to the heart of autism. Retrieved from www.rdiconnect.com/archive/newsletters/0816005/default.htm#article.

Cooper, J.O., Heron, T.E., and Heward, W.L. (2007). Applied Behavior Analysis – 2nd ed. Englewood Cliffs, NJ: Prentice-Hall.

DiCarlo, C. (2009). The roots of skepticism: Why ancient ideas still apply today. Skeptical Inquirer, 33(3), 51-55.

Grothe, D.J. (2009). Skepticism 2.0. Skeptical Inquirer, 33(6), 51-52.

Kurtz, P. (2010). Exuberant Skepticism. J. R. Shook (Ed.), Prometheus Books, Amherst, New York.

Lamal, P. (2009). Paul Kurtz: A titan of skepticism. Skeptical Inquirer, 34(4), 57-58.

Loxton, D. (Ed.) (2009). What do I do next: Leading skeptics discuss 105 practical ways to promote science and advance skepticism. Retrieved August 20, 2010 at www.skeptic.com/downloads/WhatDoIDoNext.pdf

Merriam-Webster Online (2010). Retrieved August 16, 2010 at www.merriam-webster.com/dictionary/skepticism.

Normand, M. P. (2008). Science, skepticism, and applied behavior analysis. Behavior Analysis in Practice, 1(2), 42-49.

Pigliucci, M. (2009). The moral duty of a skeptic. Skeptical Inquirer, 33(6), 18-19.

Radford, B. (2009). Chasing the ghost bird: Science, skepticism, and the ivory-billed woodpecker. Skeptical Inquirer, (34)3, 32-34.

Zane, T. (2005). Fads in special education. In Jacobson, J. W., Foxx, R. M., & Mulick, J. A. (Eds.), Controversial Therapies for Developmental Disabilities: Fad, Fashion, and Science in Professional Practice. Mahwah, NJ: Lawrence Erlbaum Associates.

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.

Zane, T. & Hanson, J. (2008). Evidenced Based Practice: A Review of the Criteria that Constitutes Evidence. Presented at the Florida Association for Behavior Analysis conference, Daytona Beach.

The writing strategy uses the mnemonics POW and WWW What-2 How-2.  POW addresses the steps before writing and stands for “Pick my ideas, Organize my notes, and Write and say more.”  WWW What-2 How-2 addresses the parts of the story and stands for “Who are the main characters? When does the story take place? Where does the story take place? What do the main characters want to do? What happens when the main characters try to do it?  How does the story end?  How do the main characters feel?”  Over a series of lessons, each study participant was taught to memorize and use the mnemonic.  Researchers gave each individual a picture prompt and asked them to write a story.

Researchers examined not only the number of elements included in the story, but also number of words and overall quality.  Students were also asked to write a personal narrative to test generalization.  Each participant increased number of words, story elements, and overall quality of story writing after learning the strategy.  Almost all participants generalized the mnemonic and increased quality of personal narratives.

This is a relatively easy intervention to teach students with ASD within the classroom or at home.  It works with the strengths of individuals to make them better writers.

Asaro-Saddler, Kristie and Bruce Saddler (2010). “Planning Instruction and Self-Regulation Training: Effects on Writers with Autism Spectrum Disorders.” Exceptional Children. 77.1 (2010): 107-124.

Researchers found that most parents learned to deliver the interventions very well.  Children showed an increase in imitative behaviors and spontaneous verbal utterances. This study suggests that short term parent training programs, as little as one hour a week for ten weeks, does lead to permanent changes in young children with autism.  This important finding shows that parents can be trained in strategies immediately following diagnosis and begin implementing interventions at home while waiting to receive services.

Read the complete research review in November’s OARacle.

Vismara, L.A., Colombi, C., and Rogers, S.J. (2009). Can one hour per week of therapy lead to lasting changes in young children with autism?. Autism, 13, 93-115.

“The silence of speechlessness is never golden. We all need to communicate and to connect with each other. It is a basic need, a basic human right,” said Bob Williams (2000, in Dell, Newton, & Petroff, 2008, p. 88). This is as true for the estimated 20 to 30 percent of children with autism who may not develop functional speech (Tage-Flusberg, Paul, & Lord, 2005) as it is for those of us who can easily communicate. There is considerable evidence that an inability to communicate contributes to the development of challenging and problem behavior.

The use of Augmentative-Alternative Communication (AAC) systems provides these children with viable options to help promote effective communication. Research supporting the use of AAC with children with autism dates back to the 1970s. AAC is best defined as any approach designed to support, enhance, or supplement the communication of individuals who are not independent verbal communicators in ALL situations.” (Nicolosi, Harryman, & Krescheck, 2005)

AAC systems can range from aided systems, such as picture boards, Picture Exchange Communication Systems (PECS), and Speech Generated Devices, to unaided systems, such as the use of gestures, signs, or finger spelling. Despite 40 years of use, there are still many myths and unanswered questions regarding the use of AAC and individuals on the autism spectrum. This article will attempt to dispel some of these myths as well as address some of the questions.

Will the use of AAC have a negative impact on my child’s speech development?

• This is a common question asked by parents when considering the use of AAC and the answer to it is no. Researchers have reviewed a large number of studies examining the outcomes of many different AAC systems and found that in no case did the use of AAC have a negative impact on speech development. (Schlosser & Wendt, 2008) In fact, in some cases, they found that AAC actually seemed to enhance speech development with modest gains. (Millar, Light, & Schlosser, 2006)

Which system works best for children with autism spectrum disorders (ASD)?

• This is actually a complex question and therefore does not have a straightforward answer. A large number of studies have documented the efficacy of picture systems and the Picture Exchange System as well as sign language (see D. Nunes, 2008, for an excellent review of this literature). Since very few studies have actually compared the efficacy of different systems to each other, it is not possible to determine if one system is better or more advantageous than another. Rather then assuming that one system is preferable to another, it is far more appropriate to evaluate each child individually and match that child’s needs, abilities, and preferences to the individual system. It is even more likely that a child will require multiple systems to compensate for the advantages and disadvantages of individual systems. In fact, research indicates that there is a growing trend towards the use of multiple systems. (Sigafoos & Drasgow, 2001)For example, sign language is often taught because, for some learners, it is faster and easy to learn. The problem, however, is that this limits the child’s communication partners, necessitating the use of another system for environments where no one else knows sign language. Or a child may be taught to use a speech-generated device with great efficacy but the device may break down, causing the child to rely on another type of communications system until the device can be used again.

At what age should I consider AAC?

• Another complex question with a complex answer. The answer is not really age-related but related to needs. In other words, a child with autism who is two years old with little or no functional speech may not require a full system if he or she can effectively be taught to point to get his or her needs met. This would allow more time to then be spent on teaching receptive language as well as sound imitation and ultimately speech production. On the other hand, a two-year-old child with little or no functional speech who was already demonstrating great frustration at not being able to effectively communicate may require a formal system such as sign language or a Picture Exchange System.

What’s new in AAC that may help my child?

• The fastest growing developments in AAC are most probably in the area of speech-generated devices (SGDs). Recent advances have made devices available to individuals with autism that are more powerful, more portable, and more affordable. (Serrott & Bowker, 2009)  For example, the Proloquo2Go is a new portable AAC system that runs on an iPhone or iPod Touch that can be used for individuals with autism.Again, however, it is important to carefully evaluate the individual child and his or her needs before moving in this direction. While it is tempting to abandon low-tech systems such as PECS or signs for these fancy technological systems, it may not be useful or appropriate for a specific child. There is emerging research demonstrating the efficacy of SGDs with individuals with ASD but much more work needs to still be done.One issue is that individuals with ASD are typically ambulatory, thereby requiring the traditional SGD to be made considerably smaller to allow for them to be portable. Once they have been made smaller, however, fewer icons can be on a given screen, often requiring navigation skills to move between screens to be able to communicate. There are many children for whom this can be easily taught and highly effective, but others may find the task tedious. In these cases, the SGD can actually potentially interfere with spontaneous communication.

What can I do (as a parent) to help my child be an effective communicator?

• There are a number of things that you can do to help your child become an effective communicator. The first is to become a strong advocate for your child’s communication needs. Be sure you interact with your child’s speech therapist regularly, and if your child is not verbal, find out what type of AAC is being used in school. Make sure an assessment was conducted and a good rationale available for the type of AAC system chosen.Use the system at home. Ask your speech therapist or classroom teacher to provide you training on using the system if needed. Communication is most effectively taught during real-life activities, which frequently occur at home. It is during these times that you want to be sure you have your child’s system available and are prompting use if needed and reinforcing accordingly. Create teachable opportunities though the use of communicative temptations and routines. You may want to review the vocabulary that will be used during a routine prior to engaging in the routine.

Conclusions

These points are the most important to remember when dealing with AAC:

1. Advances in technology and AAC are happening at a rapid pace. In order to meet the complex needs of children with autism, we must keep up with these advancements. We must continue to examine the efficacy and effectiveness of the various developments.
2. The child’s communication skills and needs also change and evolve. Parents, educators, and other caregivers must view AAC as an ongoing and continuous process. The child’s needs should be assessed and vocabulary updated as needed.
3. The ultimate goal is “independent effective communication.” A child’s AAC system should be evaluated across environments. A child may need different systems for different environments.

References:

Dell, A., G.  Newton, D., & Petroff, J. (2008).  Assistive Technology in the Classroom: Enhancing the School Experience of Students with Disabilities. Columbus, Ohio: Merrill.

Millar, D., Light, J., & Schlosser, R. (2006). The impact of augmentative and alternative communication intervention on speech production of individuals with developmental disabilities: A research review.  Journal of Speech, Language, and Hearing Research, 49, 248-264.

Nicolosi, L., Harryman, E., & Kresheck, J. (2005). Terminology of Communication Disorders (5th ed.). Baltimore: Williams & Wilkins.

Nunes, D. (2008). Augmentative and alternative communication intervention for autism: A research summary.  International Journal of Special Education, 23, 17-26.

Schlosser, R. W., & Wendt, O. (2008).  Effects of augmentative and alternative communication intervention on speech production in children with autism: A systematic review.  American Journal of Speech-Language Pathology, 17, 212-230.

Serrott, S. & Bowker, A. (2009). Autism, AAC, & Proloquo2Go. Perspectives on Augmentative and Alternative Communication, 18, 137-145.

Sigafoos, J. & Drasgow, E. (2001). Conditional use of aided and unaided AAC: A review and clinical case demonstration.  Focus on Autism and Other Developmental Disorders, 16, 152-161.

Tager-Flusberg, H., Paul, R., & Lord, C.E. (2005). Language and communication in autism. In F. Volkmar, R. Paul, A. Klin & D. J. Cohen (Eds.) Handbook of autism and pervasive developmental disorder, Third Edition Volume 1 (pp. 335-364). New York: Wiley.

In a second article, Implementing Work Systems across the School Day: Increasing Engagement in Students with Autism Spectrum Disorders, researchers presented step by step methods for implementing work systems.

As this study explains, a complete work system answers four questions visually:

1.       What is the individual is supposed to complete?

2.      How much is needed to be completed during an activity or how long will the activity last?

3.      How will the individual know that progress is being made and when is the activity finished?

4.      What happens next after the activity is finished?

The following 6 steps were presented to put individual work systems into action:

1.       Find the tasks that cause difficulties for the student.  This could be academic work, social activities, or even free time.  The task should be one the student knows how to complete but does not complete without supervision and prompting.

2.      Figure out the kind of system that works best for the student.  One type that frequently works is a “left-to-right work system.”  The tasks that need to be completed are placed on the left and moved to the right when completed.  Another system is a “matching work system.”  The tasks are presented as a series of pictures that can be matched to containers holding the tasks.  A final system is a “list work system.”  This is a top-to-bottom list using pictures or words with the tasks that need completion.

3.      Establish how the student will know when a task is finished.  This could be moving the task to a completion basket or area.  It could also be crossing off the task on the list.

4.      State what happens when the task is finished.  A picture, object, or words need to show what the student is to do next.  This can be as simple as showing the next activity on a schedule.

5.      Teach the student how to use the work system.  You may need to provide verbal, visual, and physical prompts.  Once the student understands how to use the work system they can do so independently.

6.      Use the work system and collect data on student performance.  Reviewing the data can show if the system is working and what aspects could be tweaked to work better.

Individual work systems are easy to implement in a classroom or at home with chores.  They cost little to nothing to implement and are shown to increase independence.  When an individual with autism uses a work system they self-regulate and complete tasks without constant adult presence allowing more time for the teacher to work with other students or for caregivers to complete other tasks.

Hume, Kara and Sam Odom. (2007). Effects of an individual work system on the independent functioning of students with autism.  Journal of Autism and Developmental Disorders, 37, 1166-1180.

Hume, Kara and Beth Reynolds. (2010). Implementing Work Systems across the School Day: Increasing Engagement in Students with Autism Spectrum Disorders.  Preventing School Failure, 54 (4), 228-237.

Register here for free.

Researcher’s used covert audio coaching, an ear piece connected to a walkie-talkie, to give instructions and praise to individuals with disabilities on the job.  The ear piece was not noticeable and less stigmatizing than an actual nearby job coach.  Using this method also eliminated the common problem of job coaches actually performing job tasks for the individual with a disability.  Each participant in the study responded well to the audio coaching.  They increased the amount of work completed accurately and maintained higher levels of performance after intervention.

This study presents a great idea for educators or parents working on improving work skills.  A walkie-talkie with a headset is under $50 and anyone familiar with the job task can act as a job coach.  Using audio coaching can be an inexpensive and normalizing approach to helping individuals with autism increase independence at employment.

Bennett, K., Brady, M.P., Scott, J., Dukes, C., & Frain, M. (2010). The effects of covert audio coaching on the job performance of supported employees. Focus on Autism and Other Developmental Disabilities, 25(3), 173-185.

While autism is definitely simplified in this story, it still presents a comprehensive view of strategies to use when working with a peer who has autism. She illustrates characteristics of autism in a way that will not overwhelm those who are unfamiliar with this disability.  Keating-Velasco includes thoughtful discussion questions at the end of each chapter.  In His Shoes: A Short Journey Through Autism should be used by teachers to bring depth and understanding in a peer tutoring program.  This book may be overly optimistic with the involvement of peers forming friendships with a nonverbal student with autism but it may setup peers for positive interactions.  Hopefully, this book will be an inspiration to students to reach out and get to know peers with autism.

In His Shoes is available through Autism Asperger Publishing Co.

Hippotherapy (“hippo” means “horse” in Greek), sometimes also called equine-assisted therapy or therapeutic riding, involves the use of horses to provide various therapies to persons who display a number of challenging conditions (American Hippotherapy Association; AHA). According to its Web site, the horse is used because of the “multidimensional movement” of this animal, which provides “sensory input through movement which is variable, rhythmic, and repetitive.” The movement of the horse then requires reactions on the part of the rider that mimic movements of the pelvis while walking. Such movement is claimed to be beneficial to the rider, with the speculation that mobility, posture, and balance can be enhanced (e.g., Bliss, 1997).

Smith (2009) noted that only registered occupational, physical, and speech therapists incorporate horses into treatment, using the horse as a sensory “input,” much like other sensory objects and activities. For example, physical therapists use hippotherapy, in conjunction with other motor tasks planned by the physical therapist, to facilitate improved gross motor skills, such as sitting and walking. Some occupational therapists assert that using hippotherapy along with “standard intervention strategies” from the field of occupational therapy can focus improvement on fine motor control and other skills, such as daily living skills and sensory integration. Speech-language pathologists incorporate the movement of the horse to stimulate and use the “physiologic systems” that are supposedly related to speech and language. Note that in all three of these professions, there is recognition that therapies in addition to the horse are used simultaneously. Additional psychosocial benefits are suggested as well, such as improved self-esteem, self-image, and more adept interpersonal relationships (Bliss, 1997).

Therapeutic use of the horse for persons with disabilities is quite popular. Suhfras (1996) reported that there were more than 500 accredited riding centers serving more than 25,000 patients nationally. Currently, according to the North American Riding for the Handicapped Association (NARH), there are over 3,500 certified instructors, 800 accredited riding centers worldwide, and over 42,000 participating children and adults.

There does not seem to be a standard protocol for administering hippotherapy. For example, Froeschle (2009) and Christian (2005) failed to delineate their procedures for using the horse in therapy. In the published case studies, quite a variety of approaches are described. One example was Bliss (1997), who described a weekly therapeutic riding session. Persons with significant physical (e.g., uncontrolled epilepsy, serious scoliosis) and mental (e.g., severe mental retardation) challenges were disallowed from participating. Riding helmets and a physician’s permission were required. The activities during the sessions included becoming familiar with the horse, learning how to mount and dismount, feeding, grooming, and riding. Depending upon the particular needs displayed by a rider, the therapist might include other sorts of activities while on the horse.

The Question of Effectiveness

From the perspective of evidenced-based practice, the question that naturally arises is whether there is evidence that hippotherapy is effective in causing any positive, measurable change in some aspect of functioning. Electronic databases were searched for research articles on experimental research testing the effectiveness of hippotherapy. The results showed numerous publications and testimonials describing the therapy, but no well-designed experiments on its effect. In contrast, many authors admitted the lack of experimental assessments of its benefit (e.g., Bliss, 1997; Smith, 2009).

At the AHA Web site, there were ten abstracts of published “research” articles testing some aspect of hippotherapy. One (Benda, McGibbon, & Grant, 2003) involved a random assignment design to test the difference between hippotherapy and sitting on a stationary barrel on muscle activity in 15 children diagnosed with spastic cerebral palsy. The results showed statistically significant changes in the subjects in the hippotherapy group. Seven of the remaining nine articles used single-group convenient samples (not allowing a causal relationship to be determined), another article was a survey, and the tenth article was simply a description of hippotherapy.

At another link on the AHA Web site, six “research” articles were listed, from the journal Hippotherapy. Casady (2003) did not present the results of an actual experimental study; instead, she called for more research into the effectiveness of hippotherapy using a variety of research designs with adequate internal and external validity. Another article by Casady (2004a) was not a research study testing hippotherapy in a controlled way; instead, she described the use of case studies when testing the effectiveness of hippotherapy. She accurately described the process of case studies, but later admitted “…because there is no experimental control, conclusions about the effectiveness of an intervention unfortunately may be viewed as mere presumptions.”

Later, she discussed the process to be used in deciding upon a problem to research, defining it clearly, and generating hypotheses to test (2004b). She (2005) described the threats to internal validity that must be minimized to increase confidence of a causal relationship between independent and dependent variables in another article (2005) and summarized the findings presented at the Twelfth International Congress of Therapeutic Riding in Brazil in August in yet another article on the site (2006). Case studies were the most often used design, and she did not present any definitive research findings in support or in contrast to the effectiveness of therapeutic riding.

Last, Casady (2007) briefly described single subject research, explaining the basic procedure, terminology, and how to use something called “single subject group designs.” She did not mention the traditional within-subjects designs of reversal, multiple baseline, or alternating treatments, nor did she present any quantifiable data from any single-subject design testing the effectiveness of hippotherapy. However, she did mention that the journal AHA Hippotherapy has published studies using single subject designs over the past two years.

In sum, at the AHA Web site, only one of the 16 papers purportedly showing research results actually could be considered an actual experimental test –– with some control over internal and external validity –– of the effectiveness of hippotherapy, and the focus of that study was on motor ability.

Bass, Duchowny, and Liabre (2009) studied the effect of therapeutic horseback riding on the improvement of social skills in children with autism spectrum disorders (ASD). Children were randomly assigned to either a 12-week session of horseback riding or a control group receiving no horse therapy. The dependent measures focused on social skills, sensory seeking, and social motivation. The authors concluded at the end of the study that these children did in fact show improved social skills, better sensory seeking and sensitivity, and more social motivation. However, the authors used survey instruments as the means for collecting data on the dependent measurements, so there is no confidence in the reliability of these measures (e.g., Fraenkel & Wallen, 2009). Thus, this study’s results and conclusions must be viewed with skepticism.

In sum, it seems that the level of quality research that would allow us to conclude that hippotherapy is an effective strategy for persons with developmental disabilities does not exist at this time. Many of the published papers are either simply descriptive in nature or case studies that do not allow any confidence in a causal relationship between hippotherapy and improvement in the participants. Many proponents of hippotherapy seem sensitive to the need for conducting valid, well-designed experiments that hopefully will show that hippotherapeutic techniques can effect change in consumers. As Casady rightly points out, single subject research – using well established within-subjects designs, such as multiple baseline – will hopefully be used to begin to generate a solid research base to empirically determine the effects, if any, of this therapeutic approach. However, with the current state of the evidence, hippotherapy should not be considered an intervention that has a solid research base showing effectiveness and thus should not be recommended for use on that basis.

This book validates the negative feelings siblings may have towards autism with love and compassion.  Mayerson also tackles the unfairness of having a sibling that requires the majority of parent attention.   She shows the upheaval an autism diagnosis causes in a sibling’s life.  French Fries is an excellent resource for siblings and families.

You can purchase French Fries from Northshire Bookstore.

Read the full article here.

Read the full article here.

This book is entertaining, easy to read, and helpful for all people in the autism community.  Young adults and teenagers with ASD will enjoy and benefit from hearing another person with ASD describe their experiences and how they dealt with specific.  As an educator or parent, Born on the Wrong Planet offers an excellent glimpse into the thinking process of a person with ASD.  Hammerschmidt expresses her frustrations in ways any individual can understand.  She also goes one step further and offer suggestions for interacting with people with ASD.  Born on the Wrong planet is not only interesting to read but informative as well.  Hammerschmidt’s honest writing will make individuals with ASD know they are not alone in their experiences and help others understand what it is like to have ASD.

Born on the Wrong Planet is available through AAPC.

There is probably no one more important at school to most of our kids than the teacher. We hope for an engaging teacher who understands the need to provide support as well as an expectant attitude. One who can facilitate interactions with other kids in a natural way and help develop an environment that feels like a functioning class, at whatever level of challenge our kids face. The teacher sets the tone for the rest of the team, including how paraprofessionals (e.g. one on one aides) do their work, helping find a balance of helping vs. stepping back that supports development both socially and academically.

But parents are in charge, right? We (I’m one too) must sign our agreement to the IEPs, we need to know what is happening at school, we to coordinate our efforts at home. When people consult me about almost any problem, some of the main difficulties in the system are the coordination and communication between home and school. Everyone is busy and overburdened. regular team meetings are often rare, or hastily set up in response to problems that crop up. We sometimes try to start off well by doing such things as bring gifts to the teacher or providing lots of information about our kids. But these things can easily backfire.

Bringing treats or gifts to the teacher (some families bake cookies, some families fund a new wing or gym for the school). This is a very nice thing to do. But beware that if it is much more than usual it may become problematic. We want the teacher to think well of us, and to have a good and cooperative attitude with us. But it is important to remember that while we expect teachers (and doctors, and other professionals) to like the work they do, and to like our kids, the work is, well, their job. They do it for a living. That is a very important thing. It means that it is a professional relationship, and the professional is obligated to to do his or her best aside from personal relationships that can get in the way of doing their best job for our kids. Too many or too big gifts create expectations of a special relationship or special treatment that put undue pressure on a teacher. So while we want a special relationship, that teacher who was so great for our child, the specialness we are looking for is, I think, something that transmits to all the kids in the class, not just ours. Think of it this way: would you rather the teacher single your family out as the THE family to help, and quite likely creating ill will among the other families? Be nice, be helpful, bring the occasional cookies or something. But do not overdo it.

Providing books that might help the teacher understand and work with our kids. Often these are great books, but will the teacher have time to read them? As a doctor I hear of some of my best resources from parents but I can’t always promise to read a book. Neither can a teacher. So when you provide and expect a teacher to read an excellent book that will make the school year so much better, you and the teacher may be frustrated. Good advice cannot always be delivered successfully. Now, we expect a teacher to have read an IEP, and some of them are pretty long. Not all teachers read them, and when they do not read them and something is not working well we are legitimately upset. Yet this should ideally make us step back and, instead of merely blaming a teacher for not reading it, ask ourselves as a team how come the teacher did not read it? Is it just too, long, or too complex, or too poorly written, or another boilerplate re-write of last year’s or of ‘every other kid’s’ IEP? Even if the teacher does read the IEP or, additionally, even if the teacher reads the books we supply, we know that the IEP is often a far less than perfect picture of our child, and teachers, bless them, have their own important mentors from early in their own training, are developing their skills for a about a decade into the job, need to have pretty set ways of working to be able to survive their chosen work, and the IEP, someone else’s book, or our comments as parents (or doctors), while potentially important, may just not make that much of a difference in how the teacher manages the enterprise of helping our child.

So what’s the answer to better, more effective parent-teacher communication? Home-school notes can be helpful, regular team meetings if possible. I am also a big advocate of developing a ‘quick sheet’, much like the opening instructions to a computer, that has about three main bullet points on it specific to the child, things like: “1. Wait a bit for him to respond – it is worth the wait and if you do not wait he will be lost and you will both be frustrated; 2. Facilitate a plan before recess with a plan B in case ‘running on the field’ doesn’t work out.’; 3. He’s vulnerable, so make sure the other kids know that someone is watching them so they do not tease him or exclude him. A little watchfulness and nudging goes a long way.”

Most important, I’d like to make a pitch for regular support to the teacher from a neutral outside person who can help the teacher reflect on what is going well and what might go better. Follow me a bit on this: if a teacher has – an most do – someone to help him or her think things through and problem solve, it is a liberating experience that makes the job much more interesting and survivable, this is true in most professions. When we work alone we tend to become frustrated and often enough become stuck in our thinking, fall away from time-tested principles of the profession and even from important boundaries with students, families, and colleagues. Professionals find their outlets – some after hours for better or for worse – but I am advocating for specific and regular opportunities to talk about how things are going with a trusted mentoring person or in a trusting group, not to ‘get the answers’ of what to do, but to take apart situations (whether academic challenges of students or behavioral difficulties, family circumstances of students, etc.) and think of ways to address them. This is not therapy, it is reflective problem solving. And it helps a teacher steer a better course as we go forward through the year.

This process of reflective problem solving is well described in many books, but – since now I am recommending reading! – some of the more concise pamphlets on this come from the people at Zero to Three. And here’s the thing: when teachers have this kind of support, they are much more open to hearing parents, and much more likely to want to have some regular time with parents to reflect with us about how things are going and problem solve collaboratively with us. This kind of process can grow through a system, unfolding at several levels, and especially at the most crucial one: the teacher-child relationship, where the teacher is more able to help our kids think for themselves and learn to problem solve both academically and socially. This is our goal.

So how do we as parents promote a system in which teachers get the support that makes all this happen? By approaching teachers with that same attitude, asking for brief, but regularly scheduled time (every few weeks for 15 to 30 minutes is often about right) to work talk about how things are going and problem solving. If a teacher has a caseload of kids with IEPs that is 10 kids, that might be 15-30 min/ day talking with a different family, and getting through the entire caseload every 2 weeks or so. We do not want to add too much of a burden to our teacher – remember she do not have much time. But this kind of process results in a well-oiled mechanism that results in far more mutual satisfaction on the part of families, teachers, administrators, and, of course, the kids!

The Chameleon Kid: Controlling Meltdown Before He Controls You shows kids how to prevent “Meltdown” from getting them.  It includes activities to help understand and manage overwhelming situations.  While kids will benefit from learning to control their feelings and environment by becoming a “chameleon kid,” teachers and parents can also use this book to teach idioms.  Everyone benefits from the exciting graphics and positive approach to behavior.

This book is available from Autism Asperger Publishing Company or you can win a copy by registering for OAR’s Applied Autism Research and Intervention Conference by September 28, 2010.

By showing how conversations can play the central role in diagnosis, Monteiro reminds psychologists and team members that the evaluation process is emotionally draining for parents and children. She presents a technique for establishing rapport and gaining parent trust to create a more comprehensive view of the child. Rather than present evaluation and diagnosis as clinical, cold, or “professionals vs. parents”, conversational evaluation allows parents to play a major role in the evaluation process. Monteiro points out that team members often speak about a child’s behavior during observation rather than actually interacting with the child during observation and evaluation. Monteiro also focuses on what can be done at home and in school to immediately help the child. She shows how frustrated parents feel after receiving a diagnosis with no recommendations. Her conversational evaluation paired with visuals expressing the characteristics of autism also includes recommendations to address deficits. For professionals, Monteiro takes the coldness out of the diagnostic procedure.

Both general education and special education teachers benefit from reading this book. It presents an in depth understanding of how autism is defined and diagnosed. Monteiro also shows how teachers can help students immediately rather than waiting until after diagnosis. Monteiro presents strategies for speaking with parents and involving them in all important decisions regarding their child.

For parents, reading this book will help them understand how professionals reach a diagnosis of autism. Monteiro explains the difference between various diagnoses on the autism spectrum. She gives a visual guide to understanding the three components of autism and presents examples of different children and how their deficits in these three areas lead to a diagnosis of autism. Parents will understand the elements they should look for in teams evaluating their child. Monteiro also reiterates the importance and validity of parent experience.

Autism Conversations: Evaluating Children on the Autism Spectrum through Authentic Conversations is a must read for parents, teachers, and clinicians. Monteiro presents a child centered approach to evaluation and diagnosis involving parents. She presents the symptoms of autism and explains how to help parents understand autism while providing actual recommendations for home and school. This book is an invaluable guide for anyone involved in the evaluating a child for autism.

Autism Conversations: Evaluating Children on the Autism Spectrum through Authentic Conversations can be purchased through Western Psychological Services.

Have you ever noticed how your behavior affects your child with ASD?

Ever wonder if parenting stress is more related to problem behaviors or if problem behaviors are more related to stress? Researchers, Lisa Osborne and Phil Reed investigated this “chicken or the egg” discussion in The Relationship Between Parenting Stress and Behavior Problems of Children with Autistic Spectrum Disorder published in Exceptional Children. Their research found that level of parental stress predicts child behavior problems while child behavior problems do not predict parental stress. What does this mean for researchers and educators? Interventions that do not include parents may be less effective than interventions that work to help relieve parent stress. What does this mean for parents? By finding ways to relax, parents may actually positively affect their child’s behavior.

The next time you feel guilty for taking time for yourself, don’t feel bad. Remember your mood directly impacts your child!

Osborne, Lisa A. and Phil Reed. “The Relationship Between Parenting Stress and Behavior Problems of Children With Autism Spectrum Disorders.” Exceptional Children 76.1 (2009): 54-73. Print.

My daughter Audrey is 6 1/2, and has just experienced her fourth first. Day of school that is. Each first day of school has been unique and I’ve learned so much since the preschool years, when I didn’t have the slightest idea of all of the tools and techniques that were available to help her with such a huge transition.

By the time of her kindergarten year, we had developed an in-home therapy program for her which is run by our fabulous ABA (Applied Behavior Analysis) consultant, Amy. It was through Amy that I learned about social stories, and these have proven to be the most valuable tool of all for Audrey.

Social stories are just that…stories. Little stories that are written from the child’s perspective, taking them through certain new or anxiety-inducing situations and setting expectations for outcomes, as well as their behaviors. I always joke that the moral of every social story is “You are scared to death to this, but you are going to have the time of your life doing it.” And you know what? It works like a charm. At least for Audrey. Because she can read, she rips them out of my hands when she sees me coming at her with a new one — like she’s getting hot news fresh off the wires. Something about seeing it in print and reading it to herself helps her to internalize and process what she is about to experience.

But a child doesn’t have to be able to read to get the benefit of a social story. The stories can be read to them, and using lots of pictures helps to illustrate the salient points. The most important social story that I ever wrote was for Audrey’s kindergarten year last year because she was starting a new school that is 25 miles from home. We visited the school ahead of time and I took pictures of the school’s sign and her classroom to add to the story.

One little page, with 128 words and 5 pictures. That was all it took to make the difference between a painful and a painless transition. Of course, not all of them have gone that smoothly. This year, I got lazy. She was returning to the same school, so I thought we could wing it. And then I found out that there was a new kid in the van that transports her to school. And the aid that rode along in the van (whom Audrey adored) was no longer on board. And the school had moved into a new space, which I knew, but didn’t think it would be as drastic as it was. And Audrey had a new one-on-one aid at school. And the school’s bathrooms had been wallpapered: one with tulips and the other with seashells. For some reason, the seashells threw her for a loop and she refuses to use that bathroom. OK, so even if I had written a social story, I clearly couldn’t have anticipated every little change that came her way. But maybe if I’d covered everything else, she would have been able to handle new wallpaper.

It can happen on any given day. I walk into my waiting room to invite a family into my office. A child or teen with ASD is intently focused on playing a hand-held electronic game. The parent kindly tells him to turn off the game and come into the office. The child resists, perhaps with a tantrum, perhaps throwing the game. The parent may be assertive and wrest the game, or maybe stern words are enough to get results. The child (or teen) is off to a sour start to our interaction, which naturally might focus on non-compliance at home.

Many people with ASDs have difficulty making transitions from one part of the day to the next. Often there are tantrums or even self injurious behaviors. We ask ourselves things like: “Why can ‘t he just turn off the game and come to dinner?” Is he being willful, that is, purposely non-compliant? Why? If not, what is the problem? Is this all about the ‘need for sameness’ that we hear a lot about?

Having an ASD is a set up for becoming willful. The world is a difficult place, and often enough resistance to transitions is accidentally rewarded with retreat on the part of those around him who do not want to upset him. All people with challenges, not just ASDs, may learn to control the emotional tone of the moment, gaining a sense of mastery in a difficult world, even though it is distorted and not as adaptive as he need to function in the world. This process may be almost addicting in the sense that the person becomes ever-more fixed on getting his way.

This dynamic offers a path to helping make transitions smoother. The key might be to accept the person’s resistance as an effort to do the best he can, even if it isn’t so adaptive in the larger world of family, school, etc. If we can not take is personally, and if we can honestly empathize with the person about how hard it is, we have a chance of joining the person, giving a bit of space to find a compromise solution, and perhaps effecting a smoother transition.

For instance, when we wait out a child for a bit, making clear that we see he needs a minute or two to get to a place to pause, we often see pretty good compliance. Not always, mind you, but we can often enough bargain a bit about it. I like to do this using less verbal and, more natural vocal/ gestural communication, so that we are engaging in interactions that support reading others’ cues.

This is a brief overview, but to understand it better, the next time someone interrupts you while you are doing something you like, e.g., watching TV, note the difference between when the other person intrudes during the show vs. how you feel when the person cues you that they need to talk and yet waits for the commercial. You might feel a bit of what the person with ASD feels with such requests, irritated when interrupted, but ok when you are approached in a manner that shows the person interrupting was thinking about your point of view too.

1. Prepare your child for change.

The beginning of the school year brings many changes at once. Familiarize your child with anything new related to school as much as possible. This may mean bringing your child into their school or classroom, showing your child a picture of their teacher and any classmates, or even meeting the teacher before the first day of school.

2. Discuss the unexpected.

Parents cannot anticipate everything that will happen during a school day. Prepare your child for situations that may not go as planned. Talk about a plan of attack for free time, such as lunch and recess. Use social stories to familiarize your child with routines and how to behave when the unexpected happens.

3. Reintroduce routines.

Over summer vacation your child’s morning and evening routines may have changed. They may be waking up and going to bed at different times. Start adjusting your child to the school year schedule and routine well before the school year actually begins.

4. Teach and review school related “hidden curriculum.”

While many children may switch easily between the social demands of summer activities and those required in a classroom, children on the autism spectrum may need more explicit reminders. Go over the “dos and don’ts” of acceptable school behavior.

5. Prepare yourself for change.

Meet with teachers and administrators to discuss your child’s strengths and challenges. Remember, you know and advocate for your child best. Establish communication early to develop positive relationships with your child’s teacher and school.

For more information about autism and Asperger Syndrome check out the OAR Life Journey through Autism series. Click here for a printable version of these tips.

1.  Communicate with parents.

Begin the year with positive communication to learn more about your student.  Parents know their child best.  They can help familiarize you with any behavior and safety concerns before the year begins.  The more you understand the child, the greater the potential for a successful school year and the better you communicate with the parents.

2.  Provide visual supports.

Students on the autism spectrum need visual reminders for success with learning new routines.  Visual supports may include written or picture lists of materials needed for each class, reinforcement token board, a schedule, a map of the school, and model assignments.

3.  Clearly list and teach behavioral expectations.

While most students may understand classroom behavioral expectations such as raising a hand to ask or answer questions, students on the autism spectrum may need explicit instructions.  Model and explicitly teach the behaviors you expect. 

4.  Plan to teach other students about autism/Asperger Syndrome.

Students are more likely to accept and include their peer if they understand autism spectrum disorders.  Creating a positive social environment for your student on the spectrum is important to their adjustment.

5.  Plan ahead to prepare for trouble spots.

When setting up your room and planning seating charts remember to consider the specific needs of your student.  This could mean seating a student closer to your desk or away from distractions.  Create a plan of attack for free time, such as recess and lunch, as unstructured activities may be more difficult.

For more information about autism and Asperger Syndrome check out the OAR OAR Life Journey through Autism series.  Click here for a printable version of these tips.

The most frequent question asked by parents of new and returning school students this time of the year usually focuses on the subject of how they help their children succeed during the new school year. As a parent of a daughter myself, I know that both parents and children are usually anxious starting a new school year. And for children with autism spectrum disorders (ASD), there are often additional concerns. Parents worry about how the child will fare academically, socially and emotionally. Likewise, students often have concerns about facing a new teacher, making friends and overall, any changes in their structured school life.

Parent-Teacher Meeting

Parents and teachers can work together to help children overcome these difficulties by preparing the child before the start of a term and trading critical information that will help alleviate stress on everyone. This process can begin at a meeting during the previous school year to discuss the child’s individualized education plan (IEP), a time where parents frequently get to meet their child’s new teacher.

Before the start of the new school year, parents can resume that critical dialogue by scheduling a time to go to the school with their child to meet the teacher and familiarize themselves with their classroom and the general layout of the school. Even if it’s the same classroom as last year, changes such as a new seat assignment may wreak havoc for a child with Asperger Syndrome or ASD on the first day. By visiting school before the year begins and finding out in advance about the changes to come, children will not have to face an unwelcome surprise.

Prior to the visit, parents should consider asking the teacher to pose for a photograph or provide a photo of him or her to show the child after the meeting to familiarize the child with their new authority figure or acquaint the beginning student with the concept of a teacher. Parents can also bring along a video camera to the meeting to videotape the school and classroom for the child to watch later. For new students, having them watch video of the teacher instructing her class from last year can be a great tool in helping a child relax in the classroom atmosphere.

Some teachers may have little to no experience with autism or having children with Asperger Syndrome or ASD in their classroom. Thus, they need the parents of these children to give them a window into the child’s emotional world such as how they act when they are sad, frustrated or happy. At the earliest opportunity, parents should sit down with their child’s teacher to discuss their child’s likes, dislikes and stressors. Likewise, moms and dads should identify the type of environment in which the child learns best, activities the child succeeds in and the state of the child’s organizational skills. Moreover, by giving the teacher a general understanding of your child’s strengths, weaknesses, abilities, and behaviors, you will greatly aid him or her in planning classroom activities accordingly. At the same time, you will help give your child a greater capacity for learning and prevent stressful situations for the child and teacher.

Making Friends

Mothers and fathers can also lay the groundwork for the child to form a social network by identifying students in the classroom the child already knows such as children from their previous classroom or the neighborhood. Teachers should be made aware of social activities the child does and doesn’t do well and any special arrangements the child should have during recess. Because of a lack of understanding in social situations, children with ASD often need structured activities to occupy their time during recess or free time such as study periods in middle or high school. Knowing this ahead of time can help the teacher come up with ideas for activities.

Trading Feedback

Lastly, parents and teachers should decide on how best to trade feedback about the child. Whether it’s by e-mail, phone, a shared journal or weekly meetings, parents and teachers should communicate regularly to keep up with the child’s progress. Teachers should remember that when speaking to a parent, they should always present the child’s accomplishments first and then discuss other aspects of the child’s performance. By supporting one another as members of a team, parents and teachers can help the student accomplish goals and enjoy a successful school year.

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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. This article first appeared in the March issue of The OARacle, OAR’s monthly newsletter.

Take Practical Steps to Ensure Your Child’s Safety
By Kate Britton, M.S.Ed., M.A., BCBA  and Bridget A. Taylor, PsyD, BCBA-D

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

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Every pediatrician knows the frustration of trying to quantify the speech and language skills of a screaming toddler. How many words can he say? Can she put two or more words together into a sentence? Can people besides you understand him when he talks? Questions like these, put to the parents, are the quick and somewhat crude yardsticks we often use.

Crude or not, the assessment is crucial: the earlier it is made, the earlier the speech-delayed child can get some help, and the earlier the help, the better the prospects.

Read the full article here.

The Poway Unified School District near San Diego offered Driscoll’s 11-year-old, Paul, the support of an aide for 10 hours a week — fewer than half the 21 hours Fairfax County had provided and said he deserved under federal law.

“They slashed his services in half and said, ‘We believe this is comparable,’ ” Driscoll said.

Until recently, Driscoll would have had to fight the school district alone. But under a new Marine Corps initiative, she had reinforcements: a caseworker and a special education attorney, provided by the military, to accompany her to meetings with school officials and, if need be, to court.

That initiative is part of a larger military effort, led by the Marines and the Army, to address the medical, educational and emotional challenges faced by special-needs families.

Read the full article here.