Autreat 2007

Presentations

What Current Testing Doesn’t Tell Us Or How to Show What You Know

Joanne Cafiero, Ph.D.
Barbara Stern Delsack, MSPA.CCC
Elizabeth Tsakiris, M.Ed., M.A. Doctoral Candidate, University of Maryland

Why are so many of our autistic children being diagnosed as mentally retarded? If Albert Einstein were paralyzed or unable to speak, would we lean toward the assumption he was limited cognitively? If we applied our traditional assessment and therapy approaches the most likely the answer would be “yes” unless the diagnostician was able to function outside the box of testing traditions. And, if Albert were lucky enough to find such a diagnostician, there would be a good chance that they would be challenged by some of their professional colleagues. Our presentation will introduce a format for determining the best ways for autistic adults and children to show what they know. We will discuss some of the most frequent assumptions that could derail accurate assessment and determination of successful intervention and augmentative support strategies. We do not have all the answers by any means, but if autistic adults, children and their families can add the information that we share into their advocacy skills, we feel we can give them some of the tools needed to make sure that our little “Albert” will be able to demonstrate what he knows, or at least demonstrate his potential for learning. We hope that development of this advocacy skill will also increase an awareness of resources, such as assistive technology, that can provide the tools for expression as well as learning throughout life.

Joanne M. Cafiero, Ph.D. is presently on the faculty of the Johns Hopkins University School of Professional Studies in Education, Department of Special Education, and was previously the Autism Projects Director for the Johns Hopkins University Center for Technology in Education. She is currently an autism consultant for Frederick County and St. Mary's County, Maryland Schools, and provides consultative support in autism and augmentative communication to parents, teachers and school districts throughout the United States, Europe, South America and Asia. She is also author of the recently released book, Meaningful Exchanges for People with Autism released October 2005.

Barbara Stern Delsack, MSPA/CCC, is a Speech-Language Pathologist, Assistive Technology Specialist with Montgomery County Public Schools,
InterACT Team. She is a graduate of Hahnemann Medical College and Hospital;
Philadelphia, Pennsylvania and has worked in the area of Autism for the past 20 years. In addition, she is an Adjunct Professor at Montgomery College and at The George Washington University.

Elizabeth Tsakiris, M.Ed., M.A., School Psychologist and Special Educator for Montgomery County Public Schools in Maryland, currently a doctoral candidate at the University of Maryland. Author of (2002) Evaluating effective interventions for children with autism and related disorders: widening the view and changing the perspective. In Clinical Practices Guidelines: Redefining the Standards of Care for Infants, Children, and Families with Special Needs. (pp. 725-818). Interdisciplinary Council on Developmental Learning Disorders

Parenting from a Self-Advocacy Perspective: Autistic Parents Speak

Zosia Zaks, MS
Philip Schwarz
Lisa Cohen, MS, PT

Autistic parents discuss their experiences raising Autistic, neurotypical, and other-disabled children of various ages and abilities from a self-advocacy perspective. How Autistic parents can promote self-advocacy and disability awareness in their families and society is a major theme running through each panelist’s specific topics. Topics include disclosure, navigating, relationship dynamics, sibling issues, focusing on strengths, promoting cooperation, and more. Panelists will also provide insight into parenting and family dynamics for Autistic adults considering partnership and parenting journeys of their own.

Lisa Cohen wears many hats: Professionally, she is a physical therapist in private practice with 20 years of experience working with orthopedics and chronic pain. She is also a published poet and an aspiring novelist. Lisa is currently writing her second novel, a futuristic thriller called "MindBlind." Her first novel, "The Wings of Winter" is searching for a literary agent. Her writing blog is at: www.ljcbluemuse.blogspot.com. Her Asperger self-advocacy blog is at: www.aspies.blogspot.com

Phil Schwarz is Vice-President of the Asperger's Association of New England (www.aane.org), a board-member of the Autism National Committee, and a member of the program committee for Autreat, the annual conference/retreat of Autism Network International (www.ani.ac). He is the father of an autistic son and a daughter in the broader phenotype, and an Asperger's adult himself, married to a non-autistic spouse. Professionally, he is a software developer. Some of his thoughts on being a parent on the spectrum can be found in his essay "Wearing Two Hats” (www.autistics.org/cap/twohats.html).

Zosia Zaks is the author of Life and Love: Positive Strategies for Autistic Adults. She consults with parents and families of Autistic loved ones, speaks and writes about issues of importance to the Autism community, and is pursuing licensure as a rehabilitation counselor. She also works as a heavy equipment operator and manages her online business, Intelligirl Jewelry Maker. She lives with her wife Gena, their two daughters, and their cat in New Jersey. You can read her writings on Autism and self-advocacy at www.zaksfamily.com/autism.html.

Welcome to the Jungle: Vacations for Autistic People

Joel Smith

It is possible for an autistic to enjoy a vacation! Many ideas and suggestions will be presented to allow a wide variety of people with autism to actually look forward to and enjoy their vacations. Focus will be on vacations that are enjoyable (instead of the standard vacation which might be dreaded and something to try to survive). Suggestions will also be given for autistics who have tight budgets, little spare time, significant sensory sensitivities, or narrow interests. Techniques to manage and minimize the stress of a vacation will also be discussed.

Joel Smith has traveled non-traditionally for many years, starting with short "mini-vacations" while in school and progressing to back-country backpacking trips and international travel. He has visited 43 of the 50 US states, many different US wilderness areas, and seven countries. He has slept in nearly every type of accommodation, including youth hostels, five-star hotels, camping trailers, spare bedrooms, sleeping bags under the stars, a barn, church sanctuaries, and others. During his travels, he has traveled both with and without others, and has learned many strategies that make vacations more enjoyable for himself.

Neurodiversity and the Autistic Community

Ari Ne'eman, Autistic Self Advocacy Network, President

The Neurodiversity is a relatively new force in the disability world.
Originating largely from the autistic community, this movement has immense implications for all aspects of interaction, both amongst ourselves and with the outside world. The concept of neurological diversity is the equal legitimacy of a variety of neurological make-ups. This presentation will go into depth as to the origins, implications and current activities of the neurodiversity movement.

Ari Ne'eman is the President of the Autistic Self Advocacy Network. He has a long history of policy advocacy. He recently completed serving on New Jersey's Special Education Review Commission, on the appointment of Governor Jon Corzine. In addition, he currently serves on the Youth Advisory Council of the National Council on Disability, the Program Advisory Board of the New Jersey Council on Inclusive Education and a variety of other bodies. He has also spoken on neurodiversity, the autistic community and other disability issues to many audiences, including testimony to the New Jersey Legislature. He is an Asperger's Autistic and is currently studying Political Science and Economics at the University of Maryland-Baltimore County as a Sondheim Scholar of Public Affairs.

How to be a Self-Advocate

Daniel McMullen, Speaking For Ourselves member (presenter)
Frank Yurick, President, Philadelphia Chapter of Speaking For Ourselves (presenter)
Charles Haley, Speaking For Ourselves member (presenter)
Christopher Connor, Speaking For Ourselves member (presenter)
Sharon Ferry, Director of Leadership Development, Speaking For
Ourselves (facilitator)

People living with Autism are often not asked about how they want to live an Everyday Life. So it's up to the people with Autism to take action and make their desires known. Whether a person can use language or not, that person can "speak" as long as they have the tools to make it happen. Putting a plan together and getting the support of family and professionals takes strength and skill. The title used to describe such a person is "self-adavocate." Self-adavocacy is not just speaking out, but planning, enlisting support for the plan, and putting the plan into action.

All of our presenters are members of Speaking For Ourselves who are living with Autism.
Charles Haley is the IT Associate for our organization because his main interest is working with computers. He has been a worker-volunteer for many years.
Frank Yurick is self-advocate and the President of the Philadelphia Chapter of Speaking For Ourselves. He and his fiancee live in Center City, Phildelphia. He is eager to teach others about self-advocacy.
Daniel McMullen is a young man who attends high school in Northeast Philadelphia. He is planning for his future career by teaching and presenting with other self-advocates.
Christopher Connor lives in Chester County. He is a volunteer and member of Speaking For Ourselves. During the week, Christopher works in a workshop in the Pottstown area. He wants to develop a career as an office worker.
Sharon Ferry (facilitator) is the parent of a young man living with Autism. She works for Speaking For Ourselves and supports self-advocates in running their own organization. Sharon has been teaching and presenting workshops for many years.

Autism and emotions: Some thoughts about feelings

Jim Sinclair

Autistic people often experience and express emotions differently than NT people. These differences are a very common source of misunderstanding and miscommunication between autistic and NT people. This presentation will explain what emotions are, briefly explain the most common NT expectations about emotions, and then review a number of common autistic patterns of experiencing and expressing feelings.

Jim Sinclair has a B.A. in psychology, M.S. in rehabilitation counseling, most of a Ph.D. in developmental and child psychology, and is a certified rehabilitation counselor. Jim went through numerous counseling courses protesting to instructors that the counseling techniques being taught were not appropriate for autistic clients. This presentation builds on a project Jim started during a counseling internship, to educate other clinicians about autistic people's experience and expression of emotions.

How high is the 'glass ceiling' for us?: Learning from some examples of struggles of autistic people in Japan

Joseph DeChicchis, Ph.D., Professor, School of Policy Studies, Kwansei Gakuin University, Sanda, Japan
Yasushi Miyazaki, Masters course student, Graduate School of Policy Studies, Kwansei Gakuin University, Sanda, Japan

In this workshop, we think about the invisible obstacles facing us, focusing not on neurological aspects, but on SOCIAL aspects. Citing some experiences of autistic people in Japan, we think about how high the GLASS CEILING for Japanese autistics is. Also we shall discuss whether the height is different or the same in different cultures, mainly between those of the U.S. and of Japan. The workshop will be a time for us to immerse ourselves in cross-cultural thinking, in the spirit of the name of "Autism Network INTERNATIONAL". The workshop consists of oral presentation with audio-visual aides and a discussion or role-play.

Joseph DeChicchis is a linguist specializing in the description of endangered and undocumented languages. Lecturing on various topics of language policy, especially minority language rights, he also conducts research in areas of human-computer interface and multilingual access.

Yasushi Miyazaki is a student who is finishing a masters course in Policy Studies at Kwansei Gakuin University in Sanda, Japan. Miyazaki has recently completed a thesis about multilingual media in Japan, and he has been actively helping handicapped undergraduate students. He has worked as an intern at a multilingual community radio station in the City of Kobe, where he directed a program on PDD (Pervasive Developmental Disorders). Most recently, he is pursuing practical research on self-advocacy movements of autistic people in the U.S. and Japan, for very personal reasons. In addition, he investigates the possibilities for collaboration between alternative media and autistic self-advocacy.

Information Technology & The Autistic Culture: Influences, Empowerment, & Progression of IT Usage in Advocacy Initiatives

Scott Michael Robertson, Ph.D. Candidate (Penn State)

Online information technologies (e.g. email, instant messaging, website forums) have enabled and advanced the emergence of a rapidly growing autistic culture and community where none had existed previously. Specific empowering advantages of computers and their text-based electronic communication (ex. fewer nonverbal communication cues, logical and systematic organization, lack of auditory language processing) led to their adoption and usage by autistic adults and adolescents who often found in-person communication and telephone conversation to be more challenging. Since then, the use of online IT by autistics has fueled the growth of autistic advocacy, culture, and acceptance movements, fostered the establishment of autistic-run conferences and organizations (ex. Autreat, Autscape, Autism Network International) and influenced the new development of new language (ex. neurodiversity). IT usage by autistics continues to expand as seen by the rapid growth of autistic-run blogs and online communities (e.g. Wrongplanet.net) during the last three years. In parallel, IT has the potential to facilitate greater networking and knowledge exchange between autistic self-advocates and educators, who can make use of their expertise and knowledge in planning and developing classroom, instructional, and community initiatives.

Scott Michael Robertson is a 26 year-old autistic adult living in Central Pennsylvania. Scott is currently in the third year of a Ph.D. program in information sciences and technology at Penn State University. His thesis research at Penn State focuses on the usage of information technologies to empower advocacy and education efforts for the autistic community by facilitating sharing knowledge between organizations and individuals across discipline and geographical boundaries. Scott is also the Pennsylvania regional director and vice president of the Autistic Self-Advocacy Network, a nonprofit organization dedicated to advancing acceptance, understanding, and support for all autistic individuals. He has previously spoken and consulted on issues affecting the autistic community and has taught computer programming, writing, and photography to autistic adolescents and young adults in a summer program in Pittsburgh.

If not a cure, then what? Parenting autistic children

Sue Golubock, M.Ed., OTR/L, consulting therapist and workshop presenter
Sola Shelly, AC mother, activist and writer

Accepting your child and bringing them up as autistic does not mean neglecting them! It means listening to them and learning their unique way of experiencing, to help them develop to be the best autistic person they can become. This presentation will address some common issues that parents of young autistic children struggle with, and give some practical suggestions according to ANI philosophy, on where
to start and how to seek for further help. Some guidelines will be given as well on how to be informed consumers of resources such as educational programs, therapists and literature. According to the audience's interest, part of the session will be devoted to questions and answers.

Sue Golubock is an aspie occupational therapist who learned the survival mechanics of passing for neurotypical but never learned what it meant to live until she discovered what it meant to be autistic. Sue has self-explored most of the 'therapies' touted as benefiting autistic individuals and can speak from personal experiences as to what is helpful, and what is not. Sue now works exclusively with autistic children and adults, along with their parents, in their homes where help is most needed. She also offers workshops and inservices to parents, educators, therapists to hopefully help bridge the gap in understanding that drives well-intentioned people to go in directions that are often hurtful rather than helpful to the autistic individual. Sue is active in a local autistic adult support group as well as the autistic community through ANI.

Sola Shelly is an AC mother of an autistic young man. She has been involved with the autistic community since her son's childhood, and has found the autistic community to be an invaluable resource for parenting. Sola believes that parenting autistic children is not essentially different than parenting typically developing children; caring for an autistic child has made her more aware of the essence of parenting.

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