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

May 2005

GUEST MESSAGE: Autism Community Rallies Around New Autism Legislation - Combating Autism Act of 2005

by Peter Bell

CAN CEO Peter Bell

Ten years ago, autism was largely considered a rare disorder. The prevalence was thought to be 1 in 2,500. Fewer than 25 scientists called themselves autism researchers and “early intervention” and “treatment” had not yet entered the vocabulary. In this environment, the federal government showed mild concern about autism and spent less than $8 million annually to address it. As many of us know, little if any hope was offered to families receiving the stunning diagnosis.

What a difference a decade makes. Today, autism has reached epidemic proportions with a prevalence hovering around 1 in every 166 children, making it the fastest-growing developmental disorder in the nation. Organizations such as Cure Autism Now (CAN), the National Alliance for Autism Research (NAAR), and the Organization for Autism Research (OAR) have been working tirelessly to match public attention and resources to the staggering impact of autism on our society.

CAN, NAAR and OAR didn’t just start research foundations—they started a movement. Through our combined efforts, a robust autism research community has emerged with over 700 scientists now working in the field. At the same time, the federal government is recognizing the seriousness of autism with a significant increase in funding. All combined, nearly $100 million is spent per year on autism research between both the public and private sectors. But this isn’t nearly enough for a disorder that is robbing a generation of our children.

To significantly expand the federal government's response to the autism epidemic, a landmark piece of legislation, the Combating Autism Act of 2005, has been introduced into both houses of Congress. On April 19th, U.S. Senators Rick Santorum (R-PA) and Christopher Dodd (D-CT) introduced the Senate version of the act (S.843). One month later on May 18th, U.S. Congresswomen Mary Bono (R-CA) and Diana DeGette (D-CO) introduced a similar bill in the House of Representatives (HR 2421).

The Combating Autism Act of 2005 commits an unprecedented $860 million in federal funds to combat autism through research, screening, intervention and education efforts, in effect doubling the National Institutes of Health's current autism funding level. Specifically, the legislation would:

• Require the Director of the National Institutes of Health (NIH) to coordinate all autism-related research efforts, identify NIH expenditures related to autism research, and develop a strategic plan to combat autism.
• Reauthorize the Centers for Disease Control and Prevention's epidemiological surveillance program, enhancing our understanding of autism's prevalence.
• Request the Department of Health and Human Services (HHS) to provide for a national educational program on autism.
• Reauthorize the federal Autism Coordinating Committee, an entity first created by the Children's Health Act of 2000 that has since created a generally agreed upon "road map" for future autism related research and prevention efforts.
• Provide for the development of statewide screening, education and treatment programs for autism.
• Require the Secretary of HHS to report annually to Congress regarding federal efforts to research and prevent autism.
• Request the National Institute of Environmental Health Sciences to create Centers of Excellence devoted to investigating possible environmental contributors to autism.

The Combating Autism Act of 2005 would not be a reality without the commitment of hundreds of thousands of parent advocates and concerned citizens. But it’s real, and it’s fragile, and we need everyone to participate in this effort. Parents from various autism organizations partnered with Senators Santorum and Dodd to write the bill and it’s up to each of us to make it a law.

The bill is supported by all major autism organizations, including CAN, NAAR, OAR, the Autism Society of America, Autism Speaks, the New Jersey Center for Outreach and Services for the Autism Community (COSAC), First Signs, Southwest Autism Research and Resource Center (SAARC), TalkAutism, and Unlocking Autism. Together, we are calling upon each and every American that loves someone affected by autism, or is concerned about the rising rate of incidence and lacking response from the federal government, to contact your U.S. Senators and Representatives and help gather co-sponsors for the bill. We must work together to repeat the successes of 1998-2000, which resulted in the enactment of the Children’s Health Act.

A special Web site has been set up to provide information about the Combating Autism Act of 2005 and how parents and concerned citizens can let their voices be heard. To date, over 5,000 people have called, faxed or e-mailed their Senators and Representatives to lend their support to this bill. It doesn't matter what political party you belong to; what matters is that we are all united in our effort to combat autism. We were successful in 2000, and we can be successful again. Please visit the Web site for information and tools to help you contact your representatives.

Peter Bell is the Chief Executive Officer and a Board Member for Cure Autism Now. CAN spearheaded the Combating Autism Act of 2005 with the active support of NAAR, Autism Speaks and others. In addition, Peter is a board member of the Autism Treatment Network. His12-year-old son, Tyler, has autism.

NEWS

Colorado Researchers Examine
Treatment for Anxiety Disorders

In the October 2004 issue of The OARacle, OAR announced the five winners of the 2004 research competition. Last month’s issue described a study conducted by Karen Pierce, Ph.D., Assistant Research Scientist, Department of Neurosciences, University of California, San Diego, on the early warning signs of autism in infants. This month’s article highlights a study by Judy Reaven, Ph.D., and Susan Hepburn, Ph.D. from the Health Sciences Center at the University of Colorado entitled “Family-Focused Cognitive-Behavioral Intervention for Anxiety Symptoms in Children with High-Functioning Autism or Asperger Syndrome.” This study is funded through a generous grant from the Doug Flutie Jr. Foundation for Autism and proceeds from last year’s WAFF WALK, a fundraising and awareness event in Colorado.

Researchers at the University of Colorado will soon begin tests on a treatment to combat the high risk of anxiety disorders in children with high-functioning autism (HFA) or Asperger Syndrome (AS).

Research suggests that children with HFA and AS are at a high risk for developing anxiety disorders such as obsessive-compulsive, generalized anxiety, social anxiety and panic disorders, but few treatment studies have been conducted to devise a remedy for this population. Though these children often exhibit better language skills than their low-functioning counterparts, they also have a better understanding of social-emotional situations and greater insight that can lead to anxiety disorders. Though further research must be conducted to prove this theory, clinicians are grappling with how to treat these children. Researchers Judy Reaven, Ph.D., Director of the Autism and Developmental Disorders Clinic at JFK Partners, and Susan Hepburn, Ph.D., the Director of the Autism and Developmental Disabilities Research Group at the University of Colorado Health Sciences Center, are leading a study in which they will use cognitive behavioral therapy (CBT) on children with ASD. CBT has already been proven to help typically- developing children fight anxiety disorders. Because research shows that the effectiveness of CBT protocols is enhanced when parents are included in the treatment process, Reaven and Hepburn designed the study with a strong parental component in mind.

During a previous study, Reaven and Hepburn proved the efficacy of treating anxiety symptoms of a child with AS using modified CBT strategies. For the current project, they will study the effect of CBT on twelve children ages 8-14 and their parents over a 3-month period. The treatment, according to the researchers, will consist of group therapy sessions with both the children and parents in which the students will participate in a series of activities to help the families identify the source of their child’s anxiety and strategies for handling the symptoms. The parents will also meet separately during the 3-month period to talk about the complexity and challenges of raising children with ASD and ways to help their children.

The researchers expect that a majority of the families will experience a significant decrease in severity of anxiety symptoms. After the study, they plan to create an evidence-based manual for the treatment of anxiety disorders in children with ASD that will help clinicians treat that population of child patients.

Reaven and Hepburn also hope to glean data on the characteristics of children with ASD and anxiety disorders that are most responsive to a modified CBT group treatment approach. “The focus of future research will likely include tailoring intervention to meet the individual needs and characteristics of children with ASD and anxiety,” they said. “Additional research can also focus on the early identification of anxiety symptoms in children with ASD in order to thwart the development of symptom severity.”

OAR Welcomes New York Attorney to Board

Lori Lapin Jones with her son Charlie

OAR is pleased to announce the addition of Lori Lapin Jones to the Board of Directors.

Jones is a bankruptcy attorney formerly with the Manhattan law firm, Luskin Stern & Eisler, LLP, who after a brief retirement will open her own private practice in Great Neck, N.Y., in June. Lori is the mother of a 10-year-old boy named Charlie who has high functioning autism/Aspergers. Jones was nominated to the Board due to her outstanding performance as the co-chair of Other Voices, an annual cabaret benefit event in New York City co-sponsored by OAR, for the past three years. This year’s event, which was held at Carolines on Broadway on May 16, drew more than 200 attendees and grossed almost $80,000. OAR and its event partner, Shotgun Productions, will receive close to $30,000 each after expenses.

Event co-founder (from left) John Maltby, OAR Board Member Dean Koocher and his wife Audrey and Robert Kirkland, a friend of OAR, at the Other Voices event on May 16

Jones said the applied-research focus originally drew her to OAR. As she told the audience at Carolines, “When we [parents] wake up in the middle of the night, we are not thinking about whether the cause of autism is a vaccine, a gene or the environment. Instead, we wake up wondering whether our children, grandchildren or other loved ones with autism will find a place in the world. We dissect the practical questions concerning education, housing, language, employment and above all – social acceptance. Those issues may not be the ones that attract the viewers of the television specials, but I assure you they are the questions that haunt families like my own that live with autism each day. OAR is dedicated to funding studies that address these every day, practical but difficult questions.”

She intends to take on her board responsibilities right away by expanding OAR’s presence in New York, handing out OAR publications at local school districts and regional conferences. Jones plans to reach out to parents and families to publicize OAR’s mission and garner more research dollars.

OAR Vice President Madeline Millman, who introduced Lapin-Jones to OAR just over three years ago, said, “Lori is intelligent, passionate and successful in whatever she does. She is a tremendous addition to our Board.”

Colorado Run/Walk Events Mark Record Year

Over 2,300 people, including families affected by autism, participated in the 2005 WAFF Walk events.

Annual athletic events in two Colorado cities brought together hundreds of parents and families challenged by autism and grossed over $204,000 for autism causes.

WAFF WALK 2005, a 5K run/walk and 1-mile family walk, took place on April 16 in Brighton, Colo. and April 24 in Castle Rock, Colo. and benefited the Autism Society of Colorado and OAR. Between the two cities, over 2300 people participated in the event. This year, event organizers also held the first-ever Colorado Autism Half Marathon in Castle Rock on the same day as the city’s run/walk. Several runners took on the challenging course that went uphill for the first eight miles. The top three finishers, Lori McClure, George Castorena and Becky Sitz, all of whom ran the RUN FOR AUTISM in the past, each won all expense-paid trips to this year's marathon on Oct. 30.

Event organizer and OAR Board Member Tom Schirmer said this year was the best yet for the WAFF WALK. Schirmer publicized the event by visiting the Rotary Club, the Chamber of Commerce and other community groups and local news outlets to speak about the personal impact of autism on his family. “There was a lot more emotion to this year’s event,” he said. “Our success is a great springboard for next year thanks to the great support network we’ve built.”

The run's name is taken from the presenting sponsor R. A. Waffensmith & Co., a Rocky Mountain regional power line construction company, which has generously supported the event since 2001. In a surprise presentation after the race, Schirmer and OAR Executive Director Mike Maloney presented Greg Palmer, President of R. A, Waffensmith Company, with the first “Community Leadership Award” in recognition of both his company’s and his personal commitment to autism as demonstrated through five years of the WAFF WALK. Proceeds from the WAFF WALK have benefited local programs, national advocacy, and autism research. Last year’s run/walk raised over $45,000 for OAR.

UMd. Class Turns Academics into Action

On April 28, a University of Maryland class highlighted the cause of autism as the capstone of a semester-long project on advocacy and raised more than $1,000 in a single day.

Students from the University of Maryland raised over $1,000 for OAR in a single day.

Heather Rosen and her classmates in the University’s College Park Scholars program sponsored a bake sale and raffle to raise funds for OAR. The 25 students completed the two-year program called the Advocates for Children, which culminated in a final advocacy project focused on community outreach and awareness. Rosen said they decided to raise money for autism research after hearing a presentation from one of their classmates whose brother has autism. The students set up a table near the Student Center on the University of Maryland campus to sell baked goods and raffle tickets for gift certificates at popular places in College Park, Md., where the main campus of the University of Maryland is located. They also distributed literature about autism and OAR and answered questions from interested students and faculty who passed by.

Rosen said the event taught her and her classmates about the wide impact of autism. “We were definitely overwhelmed by the response from our campus community. My entire class was so moved by the number of people who came up to the table saying that they had a son, daughter, sister, brother, cousin, or any other relative with autism,” she said. “Personally, I became so passionate about something that 4 months ago I knew very little about.”

OAR Executive Director, Mike Maloney, visited the class earlier this month to meet the students and thank each of them personally for their efforts. “It was evident that the students were truly invested in this project. Two of them had siblings with autism, which helped the group better understand how autism affects families. As welcome as their donation is, the awareness they generated among their fellow students and faculty is truly their greatest accomplishment.”

RESEARCH ARTICLE

Not Lions, Not Tigers, and Not Bears, Oh My! What Does My Student Like?
Why We Should Use Systematic Preference Assessments

by Kendra Peacock

If you have you ever said to yourself, “I can’t find anything he’ll work for,” or “He doesn’t like anything,” or “I just can’t get her to learn/cooperate,” then you understand the importance of preference assessments. A primary responsibility of a good teacher is to determine how best to motivate his or her student to learn and acquire new skills. The use of systematic preference assessments, though somewhat time intensive, is a reliable and data-based way to find out what your students really like and, therefore, what they may find reinforcing (or motivating).

Students with autism spectrum disorders (ASD) can be challenging to motivate to learn. They may be unable to communicate their preferences readily when asked. They often do not like the same items or activities as their same-age peers and their personal preferences may be highly idiosyncratic. They may like fewer items or activities than their peers, thus have fewer identified preferences, which can lead to more rapid satiation (after all, one can only eat so many Teddy Grahams® over the course of a day). Lastly and most importantly, students with ASD tend not to recognize such naturally occurring events as teacher approval or peer interaction as potential motivators. All of this can make it challenging for teachers and parents to identify and develop a sufficient number of diverse reinforcers to establish a consistent pattern of learning. Therefore, it is necessary to find items and activities that will function as reinforcement.

Systematic preference assessments allow us to determine what students prefer because high preferences predict reinforcers, and reinforcement increases behavior. Hagopian et al, (2001), for example, noted that high preference stimuli produce higher levels of responding relative to middle or low preference stimuli. Providing contingent reinforcement or delivering reinforcement when the student engages in the target behaviors and not delivering it when the student does not, is the backbone of effective teaching. Educational interventions based on the principles of applied behavior analysis (ABA) are often designed to capitalize on this fact by providing contingent reinforcement (in the form of tangibles, edibles, activities, or tokens) for both on-task and accurate responding.

The research literature provides a variety of data-based protocols to determine individual preferences for reinforcers. These protocols generally involve exposing the student to the edible, item, or activity and recording his or her approach responses or level of engagement across multiple exposures. Direct measures of preference are necessary as they tend to have more predictive validity of potential reinforcers than do indirect measures such as questionnaires (Hagopian et al, 2004). Direct measures can be categorized into two types, approach-based or engagement-based. In approach-based assessments, teachers present one or more stimuli at a time and record the student’s approach responses. Rank orders are determined by dividing the number of approach responses by the number of opportunities to approach.

There are several research-based approach assessments (e.g., single stimulus, paired stimuli, multiple stimuli without replacement), each with its own protocol, strengths and potential limitations. In brief, these assessments require that a single stimulus is presented (Pace et al, 1985); pairs of stimuli are presented (Fisher et al, 1992); or multiple stimuli are presented and, when an item is chosen from the array, it is not replaced (DeLeon & Iwata, 1996).

The single stimulus approach preference assessment (Pace, et al., 1985) is quick and easy to administer but produces less differentiated rank orders than other approach based assessments. The paired stimuli approach preference assessment (Fisher, et al., 1992) produces highly reliable and differentiated rank orders but is time intensive. The multiple stimuli without replacement approach preference assessment (DeLeon & Iwata, 1996) produces a less reliable rank order than the paired stimuli approach assessment produces but also takes less time. However, to complete this assessment protocol, students need to scan an array of seven items before choosing one, which may result in some students picking an item or object before scanning all choices. One limitation of all approach-based assessments is their limited utility in assessing activities that have no corresponding object (e.g., tickles or singing), or in assessing different activities with the same object (e.g., playing catch with a ball vs. bouncing a ball against a wall).

In engagement-based assessments, teachers present one or more stimuli at a time and record duration of student engagement with the stimuli. Rank order is then determined by taking time engaged with the stimuli and dividing it by total time available for engagement. One engagement-based assessment conducted first by DeLeon et al. (1999) and replicated by Hagopian et al. (2001) consists of presenting a single stimulus for a period of two minutes.

DeLeon et al. (1999) compared this assessment to the multiple stimuli without replacement procedure described by DeLeon & Iwata (1996) and found that the single stimulus engagement assessment produced a more differentiated rank order. Hagopian et al. (2001) used this procedure to determine a relative ranking of preferred stimuli and through a reinforcer assessment found that higher ranked preferences functioned as more powerful reinforcers than did medium or low ranked preferences (medium ranked preferences were more powerful reinforcers than lower ranked preferences). A strength of this particular preference assessment is ease with which it can be administered. Additionally, activities that do not have a corresponding object (e.g., tickles or singing) can be assessed. One drawback of this assessment is its limited ability to differentiate rank order within the highest preferences, i.e., those stimuli with which the student interacts for the entire interval.

Regardless of which preference assessment a teacher decides to use, it is important to choose a systematic way to assess preferences. While we love and know our students, it is important to remember that direct measures have greater predictive validity than indirect measures. Our students deserve high quality instruction, effective instruction. Even well designed instruction will not be effective without the successful delivery of stimuli that function as reinforcement. Systematic preference assessments provide the most reliable way to assess preferences, and high preferences usually predict reinforcers. Once a teacher can establish that her student likes lions, AND tigers AND bears, she can help her student’s skills increase, develop, and grow.

A note on language: I am using teacher to refer to anyone who is teaching, a classroom teacher, a parent, a therapist, a home tutor, a classroom aide, etc. I am using the term student to refer to the person whose behavior has been targeted for change, regardless of educational placement or age.

References

DeLeon, I. G. & Iwata, B. A. (1996). Evaluation of a multiple-stimulus presentation format for assessing reinforcer preferences. Journal of Applied Behavior Analysis. 29, 519-533.

DeLeon, I. G., Iwata, B. A., Conners, J., & Wallace, M. D. (1999). Examination of ambiguous stimulus preferences with duration based measures. Journal of Applied Behavior Analysis. 32, 111-114.

Fisher, W. W., Piazza, C. C., Bowman, L. G., Hagopian, L. P., Owens, J. C., & Slevin, I. (1992). A comparison of two approaches for identifying reinforcers with persons with severe and profound disabilities. Journal of Applied Behavior Analysis. 25, 491-498.

Hagopian, L. P., Long E. S., & Rush, K. S. (2004). Preference assessment procedures for individuals with developmental disabilities. Behavior Modification. 28, 668-677.

Hagopian, L. P., Rush, K. S., Lewin, A. B., & Long E. S. (2001). Evaluating the predictive validity of a single stimulus engagement preference assessment. Journal of Applied Behavior Analysis. 34, 475-485.

Pace et. al. (1985). Assessment of stimulus value and reinforcer value with profoundly retarded individuals. Journal of Applied Behavior Analysis. 18, 249-255.

Kendra Peacock is a supervisor at Vista Outreach Services, located near Harrisburg, Pa., which seeks to support students with autism spectrum disorders and the professionals who serve them in public school settings. She has worked in the field of autism services and applied behavior analysis for the last nine years. Her current interests are integrating the use of research-based technologies within less restrictive educational settings and staff training and performance improvement.

Special Section: RUN FOR AUTISM Spots for MCM Going Fast; Chicago Marathon Still Available With 168 runners registered for the Marine Corps MarathonTM (MCM) and 35 runners set to run the LaSalle Bank Chicago Marathon®, the RUN FOR AUTISM is reaching new heights this year. Only seven spots remain for the MCM. Entries for Chicago are still available. If you want to be part of the marathon team in either location, now is the time to sign up and be sure to get started on your training program. For those who aren’t ready for 26.2 miles, we will be building our 8K Team for the MCM over the summer. With every runner we add, it will make this year even more historic. The Chicago Marathon will be held on Sun., Oct. 9 and the MCM will take place on Sun., Oct. 30 in Washington, D.C. Since 2003, OAR has gained prominence as the only charity partner at the MCM, and as of this fall at the Chicago Marathon, dedicated to the cause of autism. In the past two years , almost 250 runners have participated and raised over $225,000 for autism research in the process. This year, OAR hopes to shatter its previous records by breaking the $200,000 mark and directing those funds into research that makes a difference in the lives of those affected by autism. RUN FOR AUTISM STATS 168 MCM runners 35 Chicago Marathon runners 21 returning MCM runners; 7 previous MCM participants in Chicago Marathon Total funds raised so far: $36,500 OAR’s Goal: $200,000 Executive Director Mike Maloney believes the RUN FOR AUTISM is breaking new ground as an autism fundraising event. “There is an interesting synergy developing,” he said. “On one hand, more and more people are taking up running as part of living a healthy lifestyle. On the other, the efforts of many groups and individuals in the autism community to raise public awareness are beginning to bear fruit. The RUN FOR AUTISM gives people that rare opportunity to do two good things at the same time — meet their health and fitness goals and dedicate their efforts to a worthy cause. The response this year bears this out.” OAR sets high goals for its runners, asking each to try to raise $2,500. This “aim high” approach has resulted in runners raising $2,000 each on the average. OAR also offers runners free marathon training support in several major cities and an online training program through USAFIT, a national training program with affiliates located in cities across the country. If you or someone you know is looking for a way to make your fitness or marathon experience more meaningful and do something at the same time that advances autism research, the RUN FOR AUTISM is for you. For details, go to the Web site or contact OAR. We and the families we serve thank you in advance for your support. Teenage Runner Crosses Finish Line at Half Marathon Brandon Bornn running with his mom, Laura Bergen- DiMarino in the George Wodicka Hook Mountain Half Marathon in April. In the March issue of The OARacle, we profiled Brandon Bornn, a 13-year-old boy with autism who was then in training for the George Wodicka Hook Mountain Half Marathon in Congers, N.Y. On April 17, Brandon completed the 13.1-mile course in two and a half hours, maintaining an 11:00 minute per mile pace, dedicating his efforts to autism and new autism research. The racecourse was one of rolling hills, including a half-mile climb up Hook Mountain starting at the ten-mile marker, but Brandon maintained his focus and only walked up the tougher hills. “It was a beautiful day and he was on a mission,” said his mom, Laura Bergen-DiMarino. “He never wavered on his quest to complete the race.” Brandon’s friends, family and classmates were also there to offer encouragement. As he crossed the finish line, Brandon raised his hands high over his head and exclaimed, “I did it!” According to his mother, he was a little sore after the race, but much too happy to dwell on the pain. “This day he outran his autism; he battled it and won,” she said. “Brandon was so happy he claimed this day to be the best day of his life.” In addition to reaching his physical goal, Brandon and his parents were able to raise close to $8,000 through the contributions from friends, family and neighbors. They set up a personal fundraising website, and held several collections in their area with the help of local running clubs. Brandon’s parents also enlisted the help of co-workers and friends, who were all willing to help. “It has been very touching to see how people rally around a cause they deem worthy,” said Bergen-DiMarino. Brandon was also honored with a RUN FOR AUTISM Finisher’s Medal from OAR and a special award given by his middle school, in recognition of his accomplishments. The Jesse Spina Award for Courage was introduced last year after Jesse Spina, a student at Felix Festa Middle School where Brandon attends, lost his battle with cancer after a long and courageous fight. “Brandon was very proud to have been given this award,” said his mother. “He works hard to overcome his handicaps and does it with enthusiasm, much like Jesse did.” Brandon’s running club, the Rockland Road Runners, also honored him with a certificate and medal upon completion of the race. “Working with Laura in support of Brandon’s efforts has been both fun and personally rewarding,” said Allison Chance, a Development Associate at OAR, who coordinates the RUN FOR AUTISM program. “Brandon was the first runner I’ve helped from the start. To see him complete his run and witness the response from his family, friends and community was very inspiring.” Brandon already has plans to run the Hook Mountain Half Marathon again next year and hopes to once again support autism research by teaming up with OAR and the RUN FOR AUTISM. In addition, Laura has just decided to run the Chicago Marathon as part of OAR’s RUN FOR AUTISM Team this year.

RESOURCE

Summer Living! Let's Have a Blast!

Note to readers: In each issue of The OARacle, we provide a helpful resource on a topic of interest within the autism community. This month's article focuses on tips for parents during their children’s summer break. Special thanks to Liane Holliday Willey, a woman with Asperger Syndrome who is also a mother, wife and author of several books on Asperger Syndrome, for her contribution.

Liane Holliday Willey, Ed.D.

Just as summertime is filled with fabulous opportunities for growth and enlightenment, it is also stuffed with any number of sensory overload possibilities. I heard it said that back in the days before pesticides and citronella, screen doors and sticky fly traps, people went stark raving mad over bugs. I live in the woods and I believe the bugs in my homestead drive me mad several times a day. As a matter of fact, while writing this, I squashed a mosquito. Nasty things. A bug like that is just the kind of thing that can make a person plagued by sensory integration dysfunction freak out. First comes the bug, then the sting, then the itch, then the scratch, then the bleeding sores, then the infections, then the trips to the doctor for tubes of cream, then… Must I go on or do you get the point? I imagine you do.

But imagine also, a summer sensory system challenged not just by bugs, but by sunburn (and more lotions and creams to avoid or appease the burn), screaming lawnmowers, competing radios, barking dogs chasing noisy neighbors, splashing swimmers, dewy mornings, humid afternoons, evenings scented by a smorgasbord of grilling meats and rotting vegetable gardens, the bright sun that stays in the sky beyond its welcome and too many tastes that should be treats were it not for the weather melting them or molding them before their time.

What to do, what to do? For starters, I recommend trying to control as much of your tumultuous summer sensations as you can. Get a Venus Fly Trap for your child’s room. Bag up extra ice so foods and drinks that are meant to be frozen or cold can be kept on the chill. Indulge in insulated cups and glasses. Find sunglasses that your child actually enjoys wearing. Purchase prescription sunglasses, if you can’t find the little flip down shades that cover clear lenses, for him or her. Encourage your child to experiment with earplugs and ear phones early in the spring so that by summertime, they can plug up or plug in and block out much of the summer racket. Don’t go outside during prime grilling hours, but if you must, try one of my favorite tricks for avoiding the “smellies” — dab a touch of an acceptable scent (I use peppermint) on a bandana that can be discretely used as a mask to cover most smells. Just advise your children that they tell others a nasty cold or allergies are plaguing their system and the bandana is there to catch the dribbles. Go to the pools, playgrounds and parks on off hours or build your own refuge in your backyard or — better yet — inside your home where you can really control the sensory environment.

All I’m really recommending is that you follow bits of common sense in order to avoid too many sensory sensations. Avoid what you can and practice getting used to, and preparing for, what you can’t. When all is said and done, summer time can be a time filled with fun and relaxation, and yes, even enlightenment and growth. I’ll tackle those topics another time! Until then, watch out for those bugs!

Liane Holliday Willey, Ed.D., is an internationally-known speaker and writer on Asperger Syndrome and a researcher who specializes in the fields of psycholinguistics and learning style differences. She is the author of Pretending to be Normal: Living with Asperger's Syndrome and Asperger Syndrome in the Family: Redefining Normal as well as the editor of Asperger Syndrome in the Adolescent Years: Living with the Ups, the Downs and Things in Between. For more information about her, please visit her Web site.

Events

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

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

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

Plenary sessions will include presentations by Gary Mayerson, an attorney and expert on education issues and IDEA as they pertain to autism, Luke Tsai, M.D., addressing the issues of medication for children on the autism spectrum, and Ann Wagner, Ph.D., Program Director of the Autism and Pervasive Developmental Disorder Interventions Research Program in the Division of Services and Intervention Research at the National Institute of Mental Health, and an NIMH panel discussing and answering questions on the status of research into services. The Conference will also feature presentations by: Peter Gerhardt, Ed.D., Joanne Gerenser, Ph.D., Michael Powers, Psy.D., Michael Fabrizio, MA, BCBA, Suzanne Letso, MA, and Brenda Myles, Ph.D. along with other leading autism professionals. For the full conference schedule, please visit the event Web site.

The cost is $50.00 per day; $90.00 for both days for those who register before Sept. 2. After that date, the cost per day will be $75; $125 for both days. Group discounts and scholarships are also available. Please contact Caitlin McBrair by phone at (703) 351- 5031 or by e-mail for more information.

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

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

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

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