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News Tips

Living Well

Health and wellness tips from Indiana University

FOR IMMEDIATE RELEASE
JUNE 15, 2005

EDITORS: This monthly tip sheet is based on Indiana University faculty and student research, teaching and service. "Living Well Through Healthy Lifestyles" is the guiding philosophy of IU Bloomington's School of Health, Physical Education and Recreation. In keeping with that philosophy, this tip sheet offers information related to both physical and mental well-being. Faculty in other IU schools and departments also contribute their expertise in this area.

June's tips focus on physical activity, early diagnosis, treatment and stress involved with autism spectrum disorders. General information about autism is available at the bottom of this tipsheet.

Autism, physical activity and sports. Children with autism spectrum disorders benefit from regular, moderate activity just like any child. Indiana University researchers have found a disturbing trend as the children age. The younger children's activity levels are similar to their peers, said Georgia Frey, an associate professor in the Department of Kinesiology at IU Bloomington's School of Health, Physical Education and Recreation. In her research, adolescents with ASD became increasingly inactive during middle and high school. When their peers turned to extracurricular sports programs, more structured school-based opportunities for activity, such as recess and physical education, were reduced or eliminated. Frey and doctoral students Chien-Yu Pan and Dawn Rosser Sandt also found few opportunities for youth with ASD to engage in physical activity outside of school. Frey said that community-based programs often did not have the necessary supports, such as trained staff, to help youth with ASD be successful in this setting. "Children with autism spectrum disorders can do anything," Frey said. "The key is finding the right activity." Youth with ASD often are not allowed in regular youth sports programs because the children do not recognize the social cues that are a mainstay of the activities. As a result, they find themselves in limbo. Because they are not physically disabled, they are not eligible for disabled sports, such as wheelchair racing, Frey said. She added that most children with ASD are not mentally retarded, so they do not technically qualify for Special Olympics, although many are given exemptions. Frey, Pan and Rosser Sandt have studied the physical activity behaviors of youth with ASD for six years. They compared physical activity patterns in children with and without ASD using accelerometry and direct observation. Their findings have been published in Adapted Physical Activity Quarterly and are scheduled for publication in two other journals. Below are some considerations regarding physical activity and ASD:

• Youth with ASD can do the same activities as their non-disabled peers, but Frey recommends individual or dual activities such as swimming, tennis, running and martial arts, which rely less on social cues, but still can have a "team" element that provides social opportunities.
• Supports include anything a child needs to be successful, such as a peer tutor or modified equipment. Frey said the most important support is an organizational commitment to allowing all children to have access and then working toward providing the supports necessary for successful participation.
• Neither the parents' physical activity behavior nor their support of their children's physical activity significantly influenced the child's physical activity levels, contrary to research involving youth without disabilities. The IU researchers surmised that it is difficult for parents of youth with ASD to provide support for physical activity when there are so few options.
• Their research findings indicate a clear need to promote and facilitate physical activity for youth with ASD. More opportunities for activity and a range of support systems are needed to provide these activities in community settings.
• Particular emphasis should be placed on active behavior during adolescence and maintaining activity during the transition to adult life.

Frey can be reached at 812-855-1262 or gfrey@indiana.edu.

Signs of autism spectrum disorders can be seen as early as 18 months. Autism is typically diagnosed in children around the ages of 3 and 4. Critical signs, however, are usually apparent in younger children making it possible -- and important -- to identify autism earlier, said Hannah Schertz, a special education doctoral candidate at the Indiana University Bloomington School of Education. Schertz said children can show greater gains when intervention begins early because of the malleability of the young brain. Schertz and other researchers are beginning to find ways to intervene more effectively with children who have been identified with an autism spectrum disorder before age 3. Schertz found that a relationship-based approach that builds on the parent-child relationship is effective in promoting crucial joint attention in toddlers. Joint attention is a milestone that is evident when a child shares attention with another person about an object or event. It is a precursor to verbal language, which is a core difficulty for children with ASD. Schertz's "joint attention mediated learning" model builds competency with joint attention through a sequence of focusing on facing, turn-taking, responding to joint attention and initiating joint attention. Schertz said researchers have found subtle social differences in retrospective videotapes of children with and without autism across cultures. One difference at about age 1 is that the group with a later diagnosis of autism does not spend as much time looking at other's faces. An even more reliable sign can be seen in toddlers who do not show signs of joint attention by age 18 months. Here are some characteristics of joint attention:

• The child may respond to a parent showing an object by exchanging looks between the object and the parent or by visually following a parent's point.
• The child may initiate a joint attention encounter by holding out or pointing to an object while shifting gaze between the object and the parent.
• Studies have found that verbal language follows very quickly on the heels of joint attention in typical development.
• Toddlers with ASD have less difficulty communicating nonverbally about an object for the purpose of requesting than for purely social reasons. They are relatively able to make their wants and needs known even without the benefit of verbal language but have difficulty with socially-oriented nonverbal communication that is for the purpose of sharing enjoyment or excitement about objects or events.

Schertz can be reached at hschertz@indiana.edu.

Start early. Early childhood intervention programs should begin as soon as young children are diagnosed as having an autism spectrum disorder, said Samuel Odom, Otting Professor of Special Education at Indiana University Bloomington's School of Education. Although such programs may begin when children are as young as toddler-age (18-24 months), most early intervention programs begin the preschool years. Research has indicated common features of effective early intervention programs for young children with ASD. The features listed below were identified in a 2001 National Research Council report. Odom, who served on the committee that wrote the report, said research continues to substantiate these findings. When designing a program for young children with ASD, the program features have to be individualized for the specific strength and needs of the child, he said. However, parents and practitioners can establish the general features of programs for young children with autism by following these features:

• Intensity: Effective early intervention programs are intense in terms of the number of hours in which young children participate in intervention activities and the active engagement of children and their caregivers in intervention activities. Although the number of hours varies with the characteristics of the child, general recommendations are for program activities to occur at least 20 hours per week.
• Predictable schedule and environment: Young children with ASD respond best in environments that are predictable and stable. In homes and in preschool programs, such features may include consistent daily schedules and routines, opportunities for limited but clear choices and a stable physical environment. Care providers often create "visual supports" (sequenced pictures of the daily schedule and picture communication systems, for example) to assist children.
• Curriculum that focuses on communication and social skills: Effective early intervention programs have curriculum that are specifically designed for children with ASD (although they may benefit other children as well) and focus on communication skills and social competence.
• Trained staff: The most effective early intervention programs have training procedures for staff that prepare them to work with young children and their families.
• Family involvement: All of the most effective early intervention programs directly involve families in providing important learning experiences for their children or extending the learning experiences that children receive in preschool classes to their homes and communities.
• Access to typically developing peers: Learning to play and communicate with peers requires that young children have planned and supported social experiences with typically developing peers. This may come through participation in preschool program with typically developing children or play dates arranged by parents. Additionally, siblings can be coached to provide important opportunities for learning play, communication and social skills.

Odom can be reached at 812-856-8174 or slodom@indiana.edu.

Family Stress. When children are diagnosed with autism spectrum disorders, their families often find themselves dealing with financial and social challenges, as well. The additional stress can be substantial, taking its toll on the whole family and even contributing to a high divorce rate, said Cathy Pratt, director of the Indiana Resource Center for Autism, which is part of the Indiana Institute on Disability and Community at Indiana University Bloomington. Fifteen years ago the incidence of autism was 1 in 5,000, compared to today's rate of 1 in 166, according to the Centers for Disease Control and Prevention. While an ASD diagnosis can alter parents' dreams for their children, they should not lose hope, Pratt said. Much has been learned about ADS in the last 15 years, she said, and research into causes and interventions continues to grow at an amazing rate. Below are tips that might help parents and families.

• Set priorities and make a plan. Identify the top few issues and needs for your family and then develop a plan and enlist others in achieving the plan's priorities.
• Intensive and ongoing interventions can have a positive long-term impact on your child. In addition to pursuing structured programming/educational options, realize that your child is learning continually. Be prepared to continually teach, coach and guide your child in simple and complex learning and social situations.
• You will serve as your child's case manager and lifelong advocate so organizing information about your child is crucial. IRCA has a Record Book for Individuals with Autism Spectrum Disorders, which can help.
• Take care of yourself and your health. You need exercise, rest, laughter and time with friends and others. Families comment that having a child with autism is not a death sentence; it is a life sentence. Maintain your stamina. Practice staying calm and finding humor each day.
• Simplify your and your child's life. Establish routines and structure, although your child's should not be too rigid. Use visual supports in your home to clarify expectations and routines.
• Learn to be consistent with praise and positive information. Minimize negative comments and punishment. Children will not learn by being told what not to do; instead, they need continual and direct guidance on expected behavior.
• Work on establishing positive relationships with professionals. You will need to work together closely to resolve difficult issues. Focus your efforts on attacking problems -- not each other.
• Celebrate and build upon your child's interests and accomplishments. Be creative. Realize that these interests and strengths could lead to a career.
• Small steps may be major accomplishments for your child. Acknowledge these and celebrate.
• Find leisure and recreational activities that the family can enjoy together. Work with the school to teach skills that will facilitate your child's involvement in these activities.
• Kids grow up, so start early to encourage and enhance behaviors that will help your child become more successful as an adult. Do not encourage behaviors that will minimize opportunities.
• You can't do it alone, so ask for and accept help from others.

Pratt can be reached at 812-855-6508 or prattc@indiana.edu. More information about the Indiana Resource Center for Autism, which is part of the Indiana Institute on Disability and Community, can be found at http://www.iidc.indiana.edu/irca.

For additional help with these tips, contact Tracy James, IU Media Relations, at 812-855-0084 or traljame@indiana.edu.

Facts about autism:

What: Autism is a pervasive developmental disability that impairs one's thinking, feeling, language and the ability to relate to others. It begins before age 3 and extends throughout and individual's life.

On the spectrum: Autism is referred to as a spectrum disorder to signify differences among a group of people who share a common diagnosis. Even though individuals diagnosed with an autism spectrum disorder share a common set of behavioral characteristics, no two individuals will be alike. Autistic Disorder, Asperger's Disorder and Pervasive Developmental Disorder Not Otherwise Specified are often called autism spectrum disorders.

Cause: Once thought to be caused by inadequate parenting, science has shown Autism Spectrum Disorder to be a neurological disorder rooted in genetic and metabolic causes.

Cure: None.

Treatment: Many individuals with autism can make great strides in developing skills that will allow them to be independent in most features of daily life. Such progress, however, depends very much on early diagnosis paired with early and continuous intervention programs designed to promote the social, communication and adaptive abilities of young children and families.

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