The most frequent requests for guidance and assistance from families of individuals with Angelman syndrome are related to behaviors. The Angelman Syndrome Foundation has listened to these concerns, and in response is offering a resource created to help all individuals who care for and work with individuals with AS better understand the complexities of behaviors that people with AS exhibit. A variety of social, psychological, environmental, medical and communication factors affect behavior, and by better understanding how these external factors affect each individual with AS, concerned families and caregivers are better able to create an action plan to help modify challenging or aggressive behavior.
Funded by the Canadian Angelman Syndrome Society (CASS) and the Angelman Syndrome Foundation (ASF), and developed by the ASF, the informational series on Angelman Syndrome Behaviors — accessible via www.angelmanbehaviors.org — is available to help those who care for or work with individuals with AS help improve quality of life for their loved one.
Using text and corresponding videos that feature world-renowned experts on Angelman syndrome and behaviors in individuals with AS, the Angelman Syndrome Behaviors informational series is designed to help users explore the possible root causes of challenging and aggressive behaviors and identify possible solutions. The interactive series of information—also called interactive modules, since each segment within the series addresses a particular aspect of behavior—is not intended to replace efforts already in progress with doctors and/or therapists; rather, the series provides supplementary information to these efforts to further assist with understanding the complex factors that result in these behaviors. The following topics are currently available:
1. Social and Environmental Influences on Aggressive Behavior
2. Mental Health Influences on Aggressive Behavior
3. Cognitive Issues, Sensory Impairments in Individuals with Angelman syndrome
Some of the features of the series include:
1. Videos and text that help to dissect or understand the possible root cause—or “triggers”—of aggressive behavior
2. Pre- and post-assessment questions that provide feedback to the user about their knowledge and mastery of the material presented
3. Links and supporting documents to track and assess behaviors are integrated within each segment
4. In the near future, a final segment will be available that brings together all of the information learned from each segment or module to further help with crafting individual behavioral modification action plans
To get started, users should complete the following steps:
1. Go to www.angelmanbehaviors.org
2. Complete a profile (which only takes a few minutes)
3. Access each segment or module individually and explore its contents
The CASS and ASF welcome any feedback from users regarding your experience in using the series on Angelman Syndrome Behaviors. As more modules become available, both organizations will issue a timely announcement so users can access and use this additional content.
If you have any questions, comments or concerns regarding the series on Angelman Syndrome Behaviors, please contact the ASF at 800-432-6435, or contact CASS at 403-931-2415 or visit www.angelmancanada.org.