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Why We Convened: Bringing Evidence-Based Knowledge and Support to Families

By Georgina Peacock, MD, MPH

Georgina Peacock, MD, MPH, is a developmental-behavioral pediatrician on the Learn the Signs. Act Early. (www.cdc.gov/actearly) campaign at the Centers for Disease Control and Prevention’s National Center on Birth Defects and Developmental Disabilities.

Dr. Georgina Peacock

The Organization for Autism Research (OAR) held the 2008 Autism Research Convocation in Atlanta on June 19 and 20. This event brought together prominent researchers to discuss social skills and adaptive behavior in individuals with autism spectrum disorders (ASD). In addition to the researchers, individuals with ASD, parents of children with ASD, professionals, and educators in the field of autism also attended.

The convocation offered insight into the challenges children and adults with ASD experience with social and adaptive skills. Socials skills show a child’s ability to adapt to the environment through verbal and non-verbal communication.  Adaptive skills allow a person to achieve independence and a level of responsibility equal to his or her age and social group.  Social and adaptive abilities are essential for achieving greater levels of personal independence and staying safe at home and in the community. Supporting OAR’s mission of putting research into practice to meet the challenges of autism, the convocation explored many themes.

Summary of Presented Findings

Social skills are often assessed using behavior observation scales and behavior rating scales.  Assessing social abilities in a variety of settings is necessary to get a full picture of a person’s skills and challenges. If the assessment determines a child needs interventions, a behavior analyst can offer supports that help the child develop social skills.  Early on, children learn social skills through imitation, development of play skills, and learning to request.  Critical issues in social skill development include learning how to socially initiate, to be socially responsive, and social comprehension.  Without these skills, people with ASD can miss important opportunities to interact with others and participate in social activities.  Therefore, social skills training should occur in natural environments and should target skills that are socially significant and meaningful with the goal of making social responses spontaneous.  Pivotal response treatment offers a developmental approach to skills building based on applied behavior analysis; its key components include early intervention in natural environments with parent training.

Joint attention is fundamental to developing communicative and social competence.  By 9 to 12 months of age, typical children intentionally use eye contact to increase social interaction. Soon after, they follow a parent or caregiver’s gaze and point at objects.  Social cognition involves both responsiveness and comprehension, and a child’s motivation may be a key to development of this social cognition. Deficits in joint attention are one of the earliest signs seen in children with ASD. Research shows that joint attention can be taught, thereby enhancing the use of language in learners with ASD. Important to note is that social competence likely plays a more significant role in quality of life than linguistic competence or intelligence level.  Social competence is a term used to describe the social, emotional, and cognitive skills and behaviors that children need to adapt to social situations.

Social skills should be addressed in school settings.  Through interventions in all aspects of the curriculum, positive behavior supports can support effective social skill development.  Some interventions will focus on the individual child while others incorporate the whole student body.  Children with ASD report they are lonely and have few friends, but teachers and others can help children feel connected to their classmates. In one case cited, brief interventions in the classroom, teaching socially competent children to include those who are socially isolated helped children who were isolated to become more engaged in activities with their peers and develop social skills. 

In addition to social skills, adaptive skills (daily living skills) development is essential for learners with ASD.  Independence from caregivers may lead to many new opportunities, and it is important to teach the skills that will contribute to increased independence. Having verbal language is not necessary to develop self-help skills such as eating, dressing, toileting, and personal hygiene. Adolescents and adults with ASD must learn to be self-advocates to include learning how to ask for and access the services and supports they need.  At times, medications can aid is treating symptoms of anxiety, inattention, lack of sleep, and aggression (both towards self and others).  A doctor should be involved in these discussions. 

Parents of a child with ASD are often under great stress; however, there is a lack of research to understand what makes some families resilient while others struggle, sometimes even “falling apart” through divorce or unemployment.  Parents are the first line of support for their children even as they grow into adulthood. As the primary caregivers, they must plan early and often about how their children will adapt as they age.  Parents are also faced with the daunting process of sorting out good interventions from the bad with the promise of cures and quick fixes.  Many of these interventions may sound good but do not live up to promises, as they play to a parents’ hope and desire for improvement for their children.  Parents and professionals must educate themselves about such suggestions and parents must be supported to make reasonable decisions in the treatment of their children with ASD.

Implications

This research presented at the OAR Convocation offers insights into how the improvement of social competence and social skills enhances the quality of life of children and adults with ASD.  Bringing highly skilled researchers together to discuss the state-of-the-art research and considerations for future opportunities is the first step.  Next is the dissemination of this material to the public who are anxiously awaiting insight into the complexities of helping children with ASD achieve social competence and independence.  This convocation is the start of a conversation about how we share information about social and adaptive competence with the public, translated into ways that can be understood and acted upon by the community.

As a developmental pediatrician who works with young children with autism and who works on a child development and autism awareness campaign, it is evident that families are desperate for information about how to improve their children’s function and outcomes.  There are many ways for parents to interact with their children that can help improve function and outcomes especially when armed with knowledge about joint attention, social competence, and the need to develop independence through self-help skills.  If parents and those who support families learn the early signs of autism, they can act early to support children to live to their full potential.

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Best Minds in Autism Field Gathered for 2008 OAR Autism Research Convocation

OAR President Peter Gerhardt, Ed.D. Reports

On June 19 and 20, 2008, the Organization for Autism Research (OAR) hosted its second Autism Research Convocation at the Carter Center in Atlanta, GA, in cooperation with the Marcus Institute. The idea behind the Convocation Program is to bring the best minds in the field together with other professionals and people with practical and personal expertise every two years to illuminate topics and priorities for research. The ultimate purpose is simple: To improve the quality of life of learners with autism and their families by  providing a comprehensive review and summary of the current state of ASD-related research on one specific topic and, subsequently, to offer recommendations in terms of best practices in that particular area and identify future research priorities. By all accounts, this first step in the process was an extraordinary success.

Over the course of the two days, a select group of prominent researchers and service providers along with professionals, parents, and individuals with an autism spectrum disorder diagnosis discussed the current research on Social Skills and Adaptive Behavior in Individuals with an Autism Spectrum Disorder. In each of the 12 presentations, the participants followed a structured format where they briefly reviewed the current research on a specific topic, discussed the relevant implications of the research, and offered their recommendations for future research and current practice. The final presentation offered a summary of the “common themes” heard across both days and was presented by OAR Scientific Council member Dr. Shahla Alai-Rosales.

Points of Consensus

While the process of synthesizing all the information from this initial meeting, writing papers, providing commentary, and publishing a comprehensive Proceedings has begun, it will be close to 18 months before it is complete. We expect the final publication to be available no later than December 2009. Nonetheless, a number of critically important points of consensus emerged. Perhaps the most significant are:

• A more comprehensive approach to investigating issues related to social skills is needed if significant change is to be possible. In particular, the field needs to move from targeting individual social skills to targeting contextual social competence.
• Future research needs to take place in the natural ecology of social relationships and take into account context, meaningful outcomes, and clinical significance.
• In so doing, we may need to expand some of our current research designs to better determine both statistically significant as well as clinically significant treatment outcomes in the area of social competence and social networks in the typical classroom environment.
• The concept and process of joint attention and its role in the development of social skills/competencies needs to continue to be investigated.
• As it is not considered a core deficit in persons with ASD, adaptive behavior has received scant research attention over the last 20 or so years.
• The vast majority of research in social skills is focused on younger learners on the spectrum. There is, therefore, a need for greater research attention with both adolescent and adult learners.
• There is a very real need for research and intervention protocols that allow for greater input by individuals on the spectrum and their families.
• Many of what may be called “evidence-based” interventions for the development of social skills fail to easily generalize to daily practice while interventions with a limited evidence base continue to flourish. Research into more effective means of translating research into practice is indicated.
• All of these issues are inter-related and future research, therefore, needs to take into account measures beyond generalization and maintenance to include assessments of “broader” change including social competence, independence, and quality of life.

This meeting is just the first step as the OAR Autism Research Convocation is best thought of as a process rather than a product. Every presenter has agreed to now “write the chapter” based on his or her presentation. Participants who did not present will be able to offer commentary on the chapters (from the point of view of a parent, a provider, or a person with an ASD). The completed chapters and their commentaries will allow OAR to formulate a research agenda for the next decade, specifically targeting the area of social competence and adaptive behavior. This entire document will be published and made available to the public.

OAR will host the next Autism Research Convocation in June 2010 on the topic of Speech, Language, and Effective Communication and continue subsequent meetings on a new topic of high research interest to the autism community every other year until 2018, when the cycle of topics is to begin again, and OAR will reconvene to reexamine the 2006 Convocation topic, Evidence-based Interventions in Support of Adolescents and Adults, in order to assess progress relative to the 2006 research agenda and to identify new or emerging priorities in this area for the next decade.

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October Conference Promises the Latest on Research and Evidence-Based Practice

Day One: Keynotes, OAR-Sponsored Research, and Research to Practice

OAR will host its Sixth Annual Applied Autism Research and Intervention Conference on Friday, October 24, and Saturday, October 25, 2008, at the Westin Arlington Gateway in Arlington, VA. For these two days, 21 leading autism professionals, researchers, and experts will come together to present the latest research and evidence-based interventions regarding autism spectrum disorders.

Over the two days, attendees will be able to choose from presentations in the following four topics: OAR-Sponsored Research, Research to Practice, Life Outside the Classroom, and Social Skills/Adaptive Behavior. Attendees need not remain on the same track, but will be free to move from one track to another throughout the conference.

Next month’s issue of The OARacle will highlight the second day of the conference on Saturday, with Life Outside the Classroom and Social Skills/Adaptive Behavior.

Friday’s tracks are OAR-Sponsored Research, focusing on specific research projects OAR has sponsored this past year, and Research to Practice, describing how families and professionals can use current information to help those whose lives are affected by autism.

The day’s schedule begins with keynote speaker Ami Klin, Ph.D., and his presentation, “Social Engagement in the First Two Years of Life in Autism Spectrum Disorders.”  This presentation will track the social development of infants and toddlers in an attempt to better understand the development of individuals on the spectrum. Dr. Klin is the Harris Associate Professor of Child Psychology and Psychiatry at the Yale Child Study Center. He directs the Autism Program at Yale, which is one of the National Institutes of Health Autism Centers of Excellence.

OAR-Sponsored Research

After the keynote speech, attendees will break into two different tracks. Beth Malow, M.D., M.S., offers the first presentation on the OAR-Sponsored Research track, “Sleep Education Classes for Parents of Children with Autism Spectrum Disorders.” It has previously been proven that children on the autism spectrum have a high prevalence of insomnia. Her research has established a sleep education program that will teach parents how to help their children become better sleepers. Dr. Malow is the associate professor of neurology at Vanderbilt University and director of the Vanderbilt Sleep Center.

Directly following Dr. Malow’s presentation on the OAR-Sponsored Research track is Philip Hineline, Ph.D. and his presentation, “Evaluating Alternative Behavioral Interventions for Children with Autism.”  Dr. Hineline, an award-winning professor of psychology at Temple University, will evaluate the Lovaas-derived model, a previously supported early intervention for autism, and compare it to two increasingly prevalent approaches: the Applied Verbal Behavior approach and the Competent Learner Model. The former has recently been rigorously advocated on the basis of its underlying rationale and a few published single-case evaluations, and the latter is characterized by especially systematic staff training and supervision.

After a lunch break provided by OAR, the OAR-Sponsored Research track will commence again with a presentation from Brian Lopez, Ph.D., and Dina Hill, Ph.D., discussing “Factors that Influence Treatment Initiation for Young Children with Autism Spectrum Disorders Following their First Diagnosis.”  Initiating early treatment for autism spectrum disorders (ASD) is known to be highly effective for young children. In their research, Drs. Lopez and Hill try to understand the factors that influence a family’s ability to initiate the high level of treatment indicated. This presentation will describe those factors—related to the child, family, and community—that influence the rate of treatment that young children with ASD receive following their initial diagnoses. Dr. Lopez, a licensed clinical psychologist at the University of New Mexico, and Dr. Hill, a pediatric neuropsychologist at the UNM Center for Neuropsychological Services, hope to use this research to provide professionals with information that will enable the targeting of limited resources towards  families who would otherwise not initiate early treatment for their children.

Concluding this track is the presentation “‘I’m Not Sure We’re Ready for This…’ Working with Parents and their Teens with ASDs towards Healthy Sexual Development” by Shana Nichols, Ph.D., coordinator of clinical and psychological services at the Fay J. Lindner Center for Autism. Dr. Nichols and her team have developed two programs to increase mutual comfort with the topic, increase the parents’ sense of competence in teaching their children, and reduce the stress regarding issues related to puberty and growing up. Components of effective group curricula, core topics, teaching strategies, and resources will be discussed for each of the two programs: (1) a 10-week group-based psycho-education course for parents that addresses sexuality and issues related to growing up for youth with ASDs, and (2) an 8-week sexuality education course for adolescent males with high-functioning ASDs.

Research to Practice

The second track, Research to Practice, runs parallel to the first track. The first presentation occurring directly after the opening keynote is “Toward Establishing Guidelines for Evidence-Based Psychopharmacotherapy in Autism Spectrum Disorders” by Luke Tsai, M.D. Dr. Tsai is professor of psychiatry and pediatrics at the University of Michigan Medical School and research scientist at Rackham Graduate School, University of Michigan College of Literature, Science, and Arts. In this presentation, he will discuss the urgent need to control the use of psychotropic medications that do not show a clear benefit in individuals with ASDs. He will propose a mechanism that will be responsible for setting up-to-date evidence-based guidelines or policies for psychopharmacotherapy in the ASD population.

Following this, Len Levin, Ph.D. will present “Training and Evaluating the Critical Treatment Skills of Interventionists in Home-Based, Intensive Behavioral Intervention Programs for Young Children with Autism.”  A new demand for “front-line” interventionists has begun, due to public policies implementing intensive, home-based, early intervention treatment and education services for young children with autism. The effectiveness of this remains dependent on the interventionist’s competence in the absence of continuous, on-site supervision. This presentation will review an intensive training protocol to facilitate the acquisition of core intervention skills. Dr. Levin is the clinical director at Coyne and Associates, a group of educators with expertise in Applied Behavior Analysis who provide services to children with autism and other developmental disorders.

After lunch, the Research to Practice track resumes with Russell Kormann, Ph.D. and his presentation “Challenges Associated with Providing Effective Behavioral Support to Individuals with Developmental Disabilities and Severe Behaviors Living in Community Residential Settings.”  Individuals with dual diagnoses (a developmental disability and an accompanying mental health and/or behavioral challenge) can have great difficulty in transitioning from congregate care settings to community-based programs while maintaining effective behavioral support. Project: Natural Setting Therapeutic Management (NSTM) was designed to facilitate this transition by teaching parents/staff members methods to construct and maintain a therapeutic environment in the home or work setting by transferring the treatment ownership from the clinician to family or staff members. In this presentation, Dr. Kormann, the associate director of Rutgers University’s Post-Traumatic Stress Disorders Program, will discuss Project NSTM and the challenges associated with the delivery of ABA services in naturally occurring community settings.

Last on this track is “Effective Intervention for Heightened Levels of Anxiety in ASD: A Case Study,” presented by Martina Boylan, M.Sc., BCBA, director of education of The Red Door, a school for pupils on the autistic spectrum. Adolescence brings anxiety for any individual, but for those on the autism spectrum this journey becomes even more complex. Boylan will present a case study describing the severe anxiety problems of a 13-year-old girl diagnosed with ASD with limited communication skills. During the onset of puberty, specific behavioral treatment interventions were required in order to help her cope with this period of emotional distress.

At the conclusion of both tracks, attendees will combine again for Roy Richard Grinker, Ph.D.’s closing keynote address, “What in the World is Autism? How Culture Shaped a Disability.”  Dr. Grinker, professor of anthropology, human sciences, and international affairs at George Washington University and author of Unstrange Minds: Remapping the World of Autism, will answer questions from the perspective of both an anthropologist and father of a child with autism. During his presentation, Dr. Grinker will describe how our perception and treatment of autism compares to that of societies throughout the world, such as in sub-Saharan Africa, India, and South Korea, and how we are part of a broader shift taking place on a global scale.

A “Meet the Speakers” reception will immediately follow Dr. Grinker’s presentation in the main exhibit area. Attendees and speakers will be free to meet, mingle, and discuss the day’s presentations and activities. All are encouraged to attend.

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What in the World is Autism? Conference Speaker Richard Roy Grinker Discusses How Culture Shapes Our Understanding of Autism

Richard Roy Grinker, Ph.D.

Anthropologist Richard Roy Grinker, Ph.D. contends that the rising numbers of children being diagnosed with autism is a good thing, not the sign of an epidemic. In fact, says the George Washington University professor and father of a daughter with autism, the rising rate of autism “is a sign that we are finally seeing and appreciating a kind of human difference that we once turned away from and that many other cultures still hide away in homes or institutions or denigrate as bizarre."

Because we have better, more accurate diagnoses of autism spectrum disorders (ASD) in the United States than ever before, more and more children are accurately diagnosed. “There is no evidence that there’s been an increase in incidence. Rather, the prevalence of autism has increased because a multitude of factors. People are being properly diagnosed, epidemiologists are counting autism correctly, and the word ‘autism’ includes so many different kinds of people than ever before.”

“The point I wanted to make with my book is that autism prevalence is a sign of progress for American culture.” With new, higher, more accurate statistics, he explains, comes the possibility of better acceptance of the disorder and the opportunity for people with autism spectrum disorders (ASD) to be fully integrated into their communities.

As one of OAR’s keynote speakers for the October Applied Autism Research and Intervention Conference, Dr. Grinker will discuss how American culture has shaped and continues to shape autism in his talk, “What in the World is Autism? How Culture Shaped a Disability.”

Author of Unstrange Minds: Remapping the World of Autism, Dr. Grinker has been a part of the George Washington faculty since 1992, a year after his daughter Isabel was born. “When Isabel was diagnosed in 1994, people started asking me a lot of questions assuming I would know the answers, questions like ‘What is the prevalence of autism in other countries?’ I started looking into what we know about autism in other cultures, including immigrant populations in the United States, and the answer is that we don’t know much. In fact, even in the United States, the gold standard of diagnosis, Autism Diagnostic Observation Schedule (ADOS), isn’t available in Spanish yet.”

Those questions and the lack of answers intrigued him and he began to study how American culture has shaped our understanding of autism and disability in general. “Today, autism has shifted from being a rare disorder to one that is much more common than previously thought,” an understanding that came about because of several factors. Dr. Grinker points to the growth of child psychiatry as one of those factors. “Before the 1970s and 1980s, there weren’t many psychiatrists who specialized in child psychiatric disorders and few were trained to understand the commonalities or core features that underlie autism.” Records of autism didn’t exist and autism cases weren’t counted correctly, so there were no good estimates of the number of cases.

Our view of autism has also become much broader, he says, which has contributed to our current understanding of what autism is. “We know there are college professors with autism, for example, and other highly functioning people who live with an autism spectrum disorder, as well as those who are profoundly affected and completely nonverbal, which was the only understanding of autism prior to 1970.”

“Since then, we’ve seen children and even adolescents who may not have been diagnosed with autism earlier correctly diagnosed. And people who before might have been diagnosed with a seizure disorder or mental retardation are now being correctly diagnosed with autism.” Correct diagnosis of autism has led, says Dr. Grinker, to “real progress in the level of community understanding of the disorder and the ability of people with autism to be accepted by and incorporated into their communities. When my daughter, Isabel, was diagnosed in 1994, for example, our understanding was not as good as it is now. There were still summer camps and educational and recreation programs that were skittish about accepting children with autism. They didn’t understand autism enough to welcome children with the disorder.” Today, her father says, Isabel, now 16, participates in camps, goes on out-of-town trips, and takes part in numerous other activities that would have been closed to her 12 or 13 years ago.

Dr. Grinker likes to think about autism as a disability rather than a disease. Unlike disease, Dr. Grinker explains, disability is a broader concept that includes the social envelope in which the person with the disability lives. In American culture, not only do we work on the disability itself so that the person with a disability can live as healthy and full a life as possible, we also try to make the social environment in which the person lives better, he says. “As we as a culture have grown to see autism as a disability, we have become much more open to integrating people with autism into our communities and workplaces.” That shift has occurred not just with autism, but disabilities generally, says Dr. Grinker, pointing to the 1990 passage of the Americans With Disabilities Act (ADA) as an example.

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NEWS From OAR

OAR Awards Scholarships to Five Students to Pursue Post-Secondary Education

Second Year of Awards Sees Applications More than Double

In September 2007, when OAR first decided to begin a scholarship program available to individuals on the spectrum pursuing post-secondary undergraduate degrees or certification via trade schools or technical and vocational training programs, we never imagined that over 80 individuals would apply within the relatively short time frame. This year, that number has more than doubled to over 190 individuals applying for one of the five available $3,000 scholarships.

Of these five awards, OAR awarded two in the category of a four-year undergraduate college or university; two to individuals attending a two-year undergraduate college; and one to an individual attending a trade, technical, or vocational school.


Four-year Undergraduate College or University Winners

Hannah M. Anderson is from Cortland Manor, NY, and will be attending the Rochester Institute of Technology in Rochester, NY. She is pursuing a degree in computer engineering technology and wishes to use this to advance the field of robotics. Besides her love of mathematics, Hannah enjoys many activities both in and out of school, including being a member of a local dance studio, a volunteer for the Amnesty International at her church, a member of the Leo Club, and the secretary of her school's Weather Club.

Jonathan Devon Spencer, from Palmdale, CA, will be attending the University of California, Merced, this fall where he will be obtaining his bachelor's degree in history. Jonathan plans to go on to receive master’s and doctorate degrees in education, with a goal of becoming a history or elementary school teacher. Proving his dedication to the education of his peers, he assumed the role of commissioner in a leadership and mentoring program called Link Crew. Jonathan also has extensive volunteer experience in his community, including volunteering for the Children's Planning Council Foundation and the Service Planning Area 1.


Two-year Undergraduate College Winners

Hillora Mae Lang, from Hampstead, NC, will be attending Cape Fear Community College, working to obtain a degree as a medical transcriptionist. She then plans to continue her schooling to receive a bachelor’s degree in writing. According to Lang, this will help her to "accomplish my goal of writing books, which will benefit everyone in the autistic-spectrum community and the world."  Aside from her love of writing, Lang has found satisfaction in caring for animals, and has dedicated much of her time as the volunteer coordinator for a feral cat sanctuary and as a co-chairperson for the Ruffian Foundation Feral Cat Sanctuary development committee.

Blake Moomau, who lives in Annapolis, MD, will attend Anne Arundel Community College in the fall. There, he will be working towards his associate's degree in mass communications and would eventually like to pursue a career in radio broadcasting. During his high school years, Blake fostered his love of sports as he played on both softball and basketball teams and became one of his school's TV sports broadcasters on the daily morning show while working for the Bowie Baysox, a local minor league baseball team.


Trade, Technical or Vocational School Winner

Bradley Dale Sarko is from Burghill, OH, and will be attending the Columbus Culinary Institute at Bradford School. There, he will be learning to do what he enjoys most: cooking. His passion for cooking started when he was only in middle school and became clearer to him as he worked his way up to the position of general manager of his school's restaurant. With this degree, Bradley hopes to be able to travel the world as a chef.

Congratulations again to Hannah, Jonathan, Hillora, Blake, and Bradley!

OAR would like to thank OAR Board member Ed Schwallie, his wife, Marge, and the Schwallie family for developing and funding this greatly needed program. In addition, OAR is grateful to the reviewers who had the most difficult job of narrowing down almost 200 well-deserving applicants to five finalists. Last, but most certainly not least, OAR thanks everyone who donated to OAR’s Scholarship Fund Drive earlier this year. It is OAR's hope that the number of awards given each year will continue to increase as awareness and support for this program grows. For more information on donating, please visit http://www.researchautism.org/support/donate/index.asp.

Staff Member Alyssa Kruszyna Adds a Husband and New Name to Her Life: Congratulations Says OAR Staff!

OAR is delighted to congratulate Alyssa Kruszyna (nee Napolitano) on her May wedding to Jeff Kruszyna. After the wedding in Eastchester, NY, the couple took off for Florida and a Disney World honeymoon. Our best wishes go to Alyssa and Jeff as they start their married life!

Intern Brian Lavelle Helps OAR With “A Little Bit of Everything”

After finding OAR by researching internships related to autism on the Web, college student Brian Lavelle has settled into work at OAR, helping the staff with “a little bit of everything from working on the website to helping redesign the Runners’ Guide,” he explains. A rising senior at George Washington University where he is majoring in political science, Lavelle will be at OAR until the end of August.

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Research Reviews: The Impact of Autism on Grandparents

Much has been written about the impact of autism on the family and on individual family members in particular. For example, research has shown us that as a group, siblings of children with autism do not demonstrate increased levels of stress or significant adjustment difficulties when compared to peers with typical siblings. This finding, while certainly not universal, is fairly robust in that it has been replicated many times over. However, when it comes to the experiences of extended family members (i.e., grandparents, aunts, uncles, and cousins), the research base is virtually non-existent. As such, this month’s research reviews focus on what little we may know about the impact of autism on key members of the extended family:  grandparents.

Grandparents of Children with Autism: A Review with Recommendations for Education, Practice, and Policy

The presence of autism in the family is often associated with changes in family structure as well as an increased risk of clinical depression and stress. While little research exists examining the impact of autism on grandparents, there is a body of research on the impact of grandparents upon the adult parents of children on the spectrum. Grandparents, particularly maternal grandmothers, tend to be significant sources of both emotional (e.g. listening, providing empathy) and instrumental (monetary, transportation assistance, baby sitting) support for their adult children. It should also be noted, however, that the research also documents the potential for grandparents to be perceived as having a negative impact particularly when, among other things, there are ongoing disagreements over treatment or the nature and cause of the child’s disability. As to the experiences of grandparents themselves, what little research exists indicates, not surprisingly, both positive and negative experiences. For custodial grandparents, the author notes “there are virtually no empirical data” to document the impact of, in effect, parenting a grandchild on the autism spectrum. In the absence of empirical research, clinical experience can directly inform practice and the author does offer some recommendations with regard to intervention and support for grandparents. Among these is the development of educational programs to help grandparents understand autism and how it impacts their grandchildren, how their behavior might impact family functioning and, down the road, the impact of any financial gifts left to their grandchildren on the spectrum. In addition, the author suggests that psychologists, educators, behavior analysts, and educators need to be made more aware of the potential challenges faced by this inadequately studied member of the extended family.

Hillman, J. (2007). Grandparents of children with autism: A review with recommendations for education, practice, and policy. Educational Gerontology, 33, 513-527.

Families in a State of Flux: The Experience of Grandparents in the Autism Spectrum

Utilizing a qualitative research design, the authors of this article sought to examine the experiences of grandparents of children with autism in the United Kingdom. To do this, researchers recruited six grandparents (five grandmothers; one grandfather) of children associated with the “Tier 4 Child and Adolescent Mental Health Service.”   All grandparents had one grandchild with ASD, except for one who had two. Ages of the grandparents ranged from 52 to 74 years while the ages of their grandchildren ranged from 3 to 5 years. A semi-structured interview format was used, which involved open-ended questioning on three topics: support services for grandparents, information, and helping your family.

Coding of the interviews resulted in the emergence of three key themes: the parental bond, striving for answers, and keeping [the family] intact. Concerns voiced related to the parental bond included the need to now care for both the adult child and the grandchild with autism and the potential  “double burden” of caring for two younger generations. How to offer support without undermining the parents and a difficult awareness of their near total reliance on professional knowledge were among the concerns subsumed under the category striving for answers. Under keeping [the family] intact the challenge of rediscovering (or reinventing) the grandparental role was noted, as was the importance of working to keep the whole family together. While there are some significant limitations (e.g. geographic, small sample size, selection bias, etc.) to the interpretation of these results, this exploratory investigation does provide valuable insight into the complex experience of “grandparenting” a child on the autism spectrum.

Margetts, J.K., LeCouteur, A., & Croom, S., (2006). Families in a state of flux: The experience of  grandparents in the autism spectrum. Child: Care, Health and Development, 32, 565-574.

Stress and Coping Among Family Members of Individuals with Autism

Glasberg, Martins, and Harris, in their review of the research on stress and coping among family members, noted that grandparents often have a significant emotional investment in their grandchildren, both because grandchildren bring joy into their lives and symbolize the continuity of generations. As such, any serious illness or disability is a source of substantial stress. And while grandparents are concerned for their grandchildren, they are also concerned for the son or daughter who is struggling to cope with the diagnosis and its inherent challenges. The authors discuss an earlier study (Harris, Handleman, & Palmer, 1985), which indicated, among other things, that grandmothers (as opposed to grandfathers) showed greater understanding of the experience of their adult children, and the most empathic understanding came from the mother’s mother, while the least empathy was between fathers of children with autism and their own fathers. Not surprisingly, adults who have a good relationship with their parents draw more support from them than do those with a less satisfactory relationship and, subsequently, when there is a generational conflict, grandparents may be a source of stress for parents (and, one might extrapolate, vice versa). Still, significant gaps in our understanding of the impact of an autism diagnosis on these important members of the extended family exist. As the authors note, “the amount of research evaluating mothers dwarfs that studying fathers, siblings, grandparents, or other extended family members” (p. 296). Hopefully, this will be rectified in the coming years.

Glasberg, B.A., Martins, M., & Harris, S., (2006). Stress and coping among family members of individuals with autism. In M. G. Baron, Groden, J.,  Groden, G., & Lipsitt, L.P., (Eds.), Stress and Coping in Autism. (pp 276-301). New York: Oxford University Press.

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FOCUS on OAR Research
A Big Boost: Jow Joint Attention Can Help Nonverbal Children LearN Language

Connie Kasari, Ph.D., hopes that teaching joint attention skills will help young children with autism who can’t speak or who can say only a very few words learn spoken language. “A study we began in 1998 with pre-school children found that children who had the least amount of language were the ones who benefited the most from a joint attention intervention.” Children with autism demonstrate significant impairments in both responding to and initiating joint attention skills, Dr. Kasari explains. “Joint attention lays the foundation for language and social development. It is what typically developing babies do before they become verbal.

“Joint attention skills include showing, pointing, and alternating looks that are used to share an event or object with another. These skills develop in very young children, and the lack of joint attention is often a first signal to alert parents to a possible diagnosis of autism.” That is why, Dr. Kasari explains in her proposal, joint attention skills are a potentially important target of early intervention for children with autism. In fact, her current OAR-funded study focuses on young children for just that reason. “This study is a randomized control trial of teaching joint attention to 3- to 5-year-old children with no or fewer than five words who have not responded to past or current intervention.”

If this study, which involves a total of 30 children recruited from community-based pre-school programs affiliated with UCLA’s Center for Autism Research and Treatment (CART), where Dr. Kasari is based, shows an improvement in the children’s joint attention skills, then Dr. Kasari plans to design a larger multiple-site study to confirm the results. Ultimately, what she and her colleagues hope for are evidenced-based methods for teaching young children joint attention skills.

How The Study Works

The children in the study will be randomized to either an ABA-based preschool program plus manualized joint attention intervention or to ABA-based preschool services only. Children in both groups will receive equal doses of intervention but the experimental intervention will involve thrice-weekly intervention on joint attention skills. The children range in age from 3 to 5 years old and are nonverbal with documented limited progress in language skill.

Half will receive the experimental intervention for three months, and all of the children will be assessed before intervention, at the end of three months of treatment and at follow up, three months post-intervention.

“We focus on joint attention skills in the context of joint engagement,” Dr. Kasari explains. “The interventionist plays with the child around a common topic that holds the child’s interest. The interventionist may prompt kids for some skills but that prompting is done within the context of that common topic.” In other words, a child who is part of the study will choose objects to play with and the interventionist then responds to that interest. “We hope that by giving kids the choice, they will engage for longer.” Longer engagement, explains Dr. Kasari, leads to more joint attention, a result that has been proven in both typically and non-typically developing children.

Dr. Kasari describes how the sessions work:

The intervention sessions are conducted at the preschool site in a session in which the interventionist plays one on one with the child. Both developmental and behavioral approaches are used to engage the child, and to directly teach joint attention skills.

During intervention sessions, the interventionist must take care to follow the child’s lead, expand on emerging behaviors, and model or suggest as necessary to keep the child engaged. In all cases, child-initiated behaviors and not just responses are prompted.

Study Results

The study results will provide “information on what types of joint attention skills are improved for which children thus providing needed information on the form and functions of joint attention most likely to improve in a short-term intervention.” In addition, because the study takes place in a pre-school, its findings can offer important information about how children with autism are supported in their classrooms, leading to a better understanding of how and when to intervene with teachers and aides to help them support and encourage joint attention skills in the classroom.

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RUN FOR AUTISM News

RUN FOR AUTISM Announces New Late Summer Races

RUN FOR AUTISM is forming teams for the Rock ‘N’ Roll Virginia Beach Half Marathon and ING Philly Distance Run. Both races are directed by Elite Racing Inc, the highly regarded Events Management Division of Competitor Group, which owns a number of popular races including the other Rock ‘N’ Roll races in Phoenix, San Diego, and San Jose and County Music in Nashville. Doug Marocco, director, RUN FOR AUTISM, notes, “Since we have become involved with Rock ‘N’ Roll Virginia Beach Half Marathon, the exposure of the partnership has generated significant interest in other Rock ‘N’ Roll events, especially with the inaugural San Antonio Marathon and Half Marathon, which will take place in November.”   

“Adding the RUN FOR AUTISM to our series allows participants of Elite Racing events an opportunity for an additional charity choice to dedicate their run,” says Dave Hussa, director of charity relations for Elite Racing, Inc. “Also, since the RUN FOR AUTISM is involved in other high-profile races throughout the country, our Rock ‘N’ Roll events benefit from the partnership when they promote their programs at race expos during the year.”

The Rock ‘N’ Roll Virginia Beach Half Marathon is now in its eighth year and has become a fixture on the East Coast race schedule as the event to do to cap off the season or prepare for a fall marathon. To be held this year on the Sunday (August 31) of Labor Day Weekend, the race has expanded to an entire weekend festival that takes place at the Virginia Beach Convention Center on Friday and Saturday before the race. The race expo features more than 80 exhibitors with the latest in sports apparel and nutritional information. On Sunday, 20,000 runners will take to the downtown streets, finishing on the boardwalk. Later that night, the B-52s will perform a concert to cap off a weekend of fun.

Just three weeks later on Sunday, September 21, a true American classic, the ING Philadelphia Distance Run will take place. The race has been the premier half marathon in the United States for the past 30 years. As a new Elite Racing event, the race will take on a Rock ‘N’ Roll flavor with a band featured every mile. This prestigious race will take runners through Philadelphia's most celebrated historic sites with a stunning course that finishes on Ben Franklin Parkway. A two-day race expo, open to the public, will be held on Friday and Saturday at the Pennsylvania Convention Center. Runners will be required to pick up their race packets at the expo and also will have the opportunity to attend various health and fitness seminars.

If you are interested in joining the RUN FOR AUTISM in either event, you can find out more on our Web site at: www.runforautism.org or e-mail run@researchautism.org.

Join OAR for Sunny January RUNs in Houston or Miami

Chevron Houston Marathon and Aramco Half Marathon

The Chevron Houston Marathon and Aramco Half Marathon will feature a sold-out field of 18,000 runners on January 18. In addition, race day also has a 5K that allows for anyone to take part in the race weekend. This will be the third year that OAR is an official charity partner with the marathon’s Run for a Reason Program. The race course is flat and fast as marathons go and has now become the “must do” race to reach a personal best.

Several runners from this year’s team have already signed up for the RUN FOR AUTISM- Houston Team, including top fundraiser Jimmy Grace who raised $10,000 this year. OAR plans to team once again with Houston FEAT, a local autism organization, to help provide a point of contact in the Houston area. Sign up now so you don’t miss out on the Houston Race weekend.

For more information on the RUN FOR AUTISM-Houston, please go to http://www.researchautism.org/news/run/races/houston.asp.

ING Miami Marathon and Half Marathon

For the third straight year, OAR will be an official Charity Partner of the ING Miami Marathon and Half Marathon. Make your travel plans now to enjoy the sun on the weekend of January 24-25 and take in a 26.2 mile marathon or 13.1 mile half-marathon. Rod and Susan Lauredo have been instrumental in raising money and awareness for OAR in Miami and will once again support the effort in 2009. The scenic course takes runners down the streets of South Beach, across the historic Venetian Causeway, and through the Art Deco district. Marathon runners will add an out-and-back section in the Coconut Grove area before crossing the same finish line in downtown Miami.

You can also take in the Health and Fitness Expo, which is open to the public and features the active lifestyles of Miami. The ING Miami Marathon, Half Marathon, and associated 5K race, which takes place on Saturday, allows an opportunity for runners and walkers of any ability to participate in a world-famous destination event.

For more information on the RUN FOR AUTISM-Miami Race, please go to http://www.researchautism.org/news/run/races/Miami.asp.

Three RUNners Share Their Extraordinary Ordinary Stories

OAR’s RUNners come in all shapes and sizes and they began running for all kinds of reasons. What binds them is the desire to not only run but to RUN to help people with autism and their families through OAR. We wanted to give our readers a look at some of these extraordinary ordinary people who run because, as one of them says, “In training and competing, we can all grow stronger and make a difference in the lives of individuals affected by autism. It's a solid WIN/WIN.”

Avid Athlete, Amateur Researcher
Ken Blahetka was never athletic. In fact, he explains, the year before he started running in 2004, he weighed more than 400 pounds. A systems administrator for Petco in Joliet, IL, Blahetka says he began enjoying new challenges and accomplishments as he lost weight. “Running distances (when I started, it was 5Ks) was rewarding and helped me to forge a way to run even further and push myself even harder.”

Today, having lost 155 pounds, Blahetka is training for his second marathon, which will be the Chicago Marathon in October. Since March, he has run an 8K, done a triathlon (400 meter swim, 14.7 mile bike, 4.1 mile run), and participated in a half Ironman (1.2 mile swim, 56 mile bike, 13.1 mile run).

He also decided to take on his own research project to see how hard all of this autism research could be. He spent a month compiling facts about his son, Kevin, 5, who has autism. At the end, he had a few facts to put up on his fundraising webpage and this to say: “As you can see, my month of research was pretty useless and didn’t help anybody. Thankfully, with your help, money raised by OAR will be put into the hands of people who know what they are doing and can help better the lives of people with autism.”

So far, Blahetka has raised more than $1,100. You can read more about his son and his research at www.firstgiving.com/kblahetka.

Running to Hike...And Help
Jennifer Frimml lives in Marion, IA, where she is a teacher. She started running because she wanted to get in shape for the backpacking trips she had been taking with friends. She’s hiked the Pacific Crest Trail through the Sierras and Washington State, the Tahoe Rim Trail, and much of Colorado on the Continental Divide Trail. “Running,” she says, “helps me keep a solid base for the many miles of hiking in the summer.”

Besides running in a number of “Ks,” from 5Ks to 10Ks, Frimml has completed two marathons with plans to run in the upcoming Chicago Marathon for OAR in October.

While Frimml ran her first marathon for the fitness, she ran the second one for a cause. “This school year, I had a student with autism and two others with Asperger Syndrome.I felt so touched, yet so intrigued by these students that I wanted to learn more. Autism is becoming more and more of an issue in our young people.OAR is an organization dedicated to research, and right now we need to figure out what is causing this disorder and how we can help it.”

Frimml has raised more than $1,500 so far. You can find out more about her efforts at www.firstgiving.com/jenniferfrimml.

From Aha Moment to Tri Training
Sarah Young bluntly states that she “has never been a runner.” In fact, she “was an avowed non-runner.” Until, that is, the massage therapist and personal trainer from Clawson, MI, met the ChiRunning system and its creator, Danny Dreyer. After she read his book and took a workshop, her whole experience of running changed.

Still, it was a personal run-around-the-neighborhood kind of experience. Then she had another “aha” moment, this time brought on by friends. “I offered to ‘coach’ a friend who lives in DC and wanted to do a triathlon. She recruited a couple of other women and I said I would ‘coach’ them too. Somewhere along the line, Mary Clare said, ‘You're doing this with us, aren't you?’ I had no choice but to surrender. So now I am a proud member of Team Ryan.” The team consists of eight phenomenal women, Mary Clare Gumbleton, Michele Causley, Donna Shank, Lisa Mills, Michelle White, Debi Holland, Jo Eckert, and Young, from three different states and the District of Columbia.

All eight women will run, swim, and bike their way through Williamsburg, VA, and the surrounding area this coming September as part of the Patriot's Sprint Triathlon. But they aren’t doing this just for the athletic experience.

Together, the eight women make up Team Ryan. Young explains, “Donna's youngest son, Ryan, is autistic. That's how we became Team Ryan. Donna is an amazing woman and an even more amazing mom. We all have learned how much Donna; her husband, Greg; and their sons, Daniel and Ryan, have done to live rather than survive with autism.” So far, the phenomenal eight have raised more than $3,000.00.

Check out Sarah Young and Team Ryan on the team’s fundraising page at www.firstgiving.com/team4ryan.

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SALUTE
Open-Hearted Kellys Open Doors for Young People

“If young adults in the autism community are able to excel to a level of a college education, Trish and I don’t want finances standing between those young adults and that opportunity. That’s why we decided to give money to OAR for the scholarship fund,” explains Brian Kelly, an OAR supporter and active member of the autism community, along with his wife, Trish.

The Kellys were so pleased by the accomplishments of the inaugural recipients of the Schwallie Family Foundation’s scholarship fund in 2007 that they offered to add $13,500 to the fund to ensure that the three young people, Meaghan Flemming Buck, Alexander Smoot, and Luke Ross, could finish their educations.

It’s obvious in talking to Brian that he and his wife enjoy being able to support young people as they work toward achieving their goals. Proud parents of six children, Patrick, 11; Michael, 9; Faith, 7; Julia, 5; and Koko and Aedan, both 2, the Kellys are keenly interested in using their charitable giving to improve the lives of children. When their oldest son was diagnosed with autism, working with the autism community became their focus.

And they are not people who just throw money at causes. Both like to roll up their sleeves and get involved. “There’s so much need,” says Kelly. In fact, says Brian, he and Trish were all set to start their own autism organization when they met Suzanne and Bob Wright, who were in the process of setting up Autism Speaks. “They were planning to do everything we wanted to do so we joined forces and here we are.” Within a month of the organization’s launch, Brian joined the board of directors and the executive committee, where he still serves.

“I met Peter (Gerhardt) through the Autism Speaks family service committee, which I chair, and he’s a member. When I heard what Peter and OAR were doing, especially when he started talking about the scholarships, I knew I wanted to get involved.” Brian and Trish talked it over and found out more from Dr. Gerhardt.

That simple process marks how the Kellys make their giving and involvement decisions. “Trish and I are a very small, very entrepreneurial giving committee. We meet over dinner, talk about what we’re interested in and then give money if we think it’s a good idea.” In addition to their contribution to OAR’s scholarship fund, the couple has provided funding to a number of other organizations, including endowing The Koegel Autism Center at UCLA. The center is named in recognition of Dr. Robert Koegel, the facility's longtime director and a professor of education at the Gevirtz School, and his wife, Dr. Lynn Kern Koegel, the center's clinical director of Autism Services.

Their entrepreneurial approach to their charitable and volunteer involvement comes naturally. Both Brian and Trish are business founders. Brian is the a principal and founder of Eastern Development, LLC, where he has invested in more than 100 retail and office projects totaling over 8 million square feet with a value in excess of $1 billion. Trish is a successful business owner and investor. From 1993 until 2001, she owned Priscilla of Boston, a highly recognized, upscale bridal retailer and manufacturer, which she sold to May Department Stores.

The family moved to Montecito, CA, when they found an autism program for Patrick. A one-month trial extended and the family has settled on the West Coast, spending summers in Massachusetts where their roots are.

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