| ASA's 36th National Conference on Autism Spectrum Disorders (July 13-16, 2005) |
ASA Homepage |
| Friday, July 15, 2005: 8:30 AM-10:00 AM | |||
| 104 | |||
| #1533- From The Horses' Mouths To The Foals' Ears: Explaining Autism To Children | |||
| Adults on the autistic spectrum are often contacted by parents asking for advice on how much, what, and how to explain autism to their children. Five adults on the autistic spectrum offer ideas on what, when, and how to explain and what they wish they had known. | |||
| Presenters: | - Lars Perner is an Assistant Professor of Marketing at San Diego State University, Imperial Valley. Dr. Perner holds a Ph.D. in marketing, an M.B.A., and a B.A. in political science and psychology. He became interested in autistic spectrum disorders after being diagnosed with Asperger’s Syndrome late in life. Dr. Perner is a member of the ASA and the American Psychological Association,and operates several web sites on autism.
- Diagnosed with "strong autistic tendencies," nonverbal until four and recommended for institutionalization, Stephen Shore is completing a doctorate at Boston University focusing on helping people with autism develop their capacities to the fullest extent possible. Presenting and consulting internationally, Stephen is board president for the Asperger’s Association of New England and serves as board member for several other organizations. - Kassiane Sibley is an independent young adult on the autism spectrum. She coaches tumbling and teaches advocacy skills and ballet to children with autism and Asperger syndrome. She wrote a chapter of Ask and Tell: Self Advocacy and Disclosure on the Autism Spectrum, and has presented locally and nationally. - Michael Carley is both an adult on the autistic spectrum and the father of an eight year old son with Asperger's Syndrome. He is Executive Director of The Global and Regional Asperger Syndrome Partnership, Inc. (GRASP), the largest organization of autistic adults in the world. - Patricia Clark, recording secretary of her local ASA chapter, was diagnosed with regressive autism about 1950. She is an editor, journalist and parent of adults, who volunteers full-time as an advocate and speaker in the Atlanta area. She helped form a local adult autistic support group. Her focus is on services for adults that allow self-determination and as much self-support as possible. | ||
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This session proposal was inspired by the frequent e-mails received by one of the panelists from parents about discussing autism with their children. Adults on the autistic spectrum are often contacted byparents asking for advice on how much, what, and how to explain autism to their children. Having grown up with symptoms of autism often being undiagnosed until later in lifethis group often has insight into information they would have liked to have and how the information could best be understood. In addition, experience going through life with autism has provided insight into which issues seem to be most important. Since the challenges, needs, and communication styles of each individual is different, no "cookie cutter" recipes for explanation can be offered. However, individuals on the spectrum can provide insight that can help guide parents and professionals in developing their own explanation. Because of these individual differences in needs and perceptions, diversity in perspective is also essential. For this reason, proposed panelists vary among gender, age, life experience, age of diagnosis, and challenges faced. Some have experiences as parents of children while others do not. Special emphasis will be put on using terms and approaches that are readily understood and are meaningful to someone on the spectrum. Since autism is in many ways is rather abstract, a careful balance must be made in using descriptions that are relatively concete. Issues that the panelists will address: • Language that is meaningful--i.e., when is it appropriate to use "autism," "PDD," or "Asperger's Syndrome," and when will other terms be more meaningful? • How he or she is different from others (siblings, other children, classmates, people in general). The idea that people--whehter on the spectrum or not--are all different and how autism represents one difference. • What is autism not? The child may hear many stereotypes and misconceptions about autism. What are some things the child should be prepared for? • Why certain problems are experienced (e.g., social, neuromotor, language, communication). • Disclosure to others. Two of the panel members have written a book on this topic and others have extensive experience both in terms of their own decisions and in counseling others. • Dealing with social world. Explaining social expectations and what others are likely to take for granted. • Sensory issues that may be applicable. Sensory vulnerabilities differ tremendously among individuals. Also, these are a matter of degree. A problem is that many children on the autistic spectrum do not know what is "normal" and may communicate problems. Panelists' experiences in identifying their own vulnerabilities will help provide meaningful descriptions. • Physiological and biological bases for autism. This topic may not be a priority in many cases, but panelists have ideas on tackling this topic if it comes up. • Family history issues. Events are often experienced differently by people on the spectrum. Some past events can be traumatic or can help explain current feelings and behaviors. • Providing encouragement and support. What are some things that were felt and comforting, and which approaches were not? What are some well meaning but misguided attempts? How do we emphasize the positive? • Gender and ethnic issues. Experiences often differ considerably among males and females. This panel has a nice balance of three males and two females. Autism is increasingly being recognized across ethnic groups. Several of the panelists have experience working with people in a cross-cultural context and will discuss relevant issues. For example, some languages are more precise than others and cultures tend to differ in the extent to which disclore is considered appropriate. • Challenges that lie ahead. It is not too early to look ahead. Panelists will discuss challenges they faced and how a younger child can be prepared. A significant amount of time is planned for questions. |
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