Presentations

TUESDAY, JUNE 30

The History of Autism: How We Got to Where We Are Now and Where We Are Going From Here.

Zosia Zaks, M.S., M.Ed.

The definition of autism has changed radically in the past 20 years. Until recently, autism was considered a tragic, rare disease that destroyed a child's life. Today, autistics as well as some non-autistic allies have gained a voice and challenged this notion. How did such a complete shift in thinking occur so rapidly? What are the implications for autistic children and adults? This workshop will provide an overview of the history of autism, allowing the community to better place today's debates and decisions in context.

Zosia Zaks is an autistic adult and the parent of an autistic child. Zosia, author of Life and Love: Positive Strategies for Autistic Adults, speaks nationally and writes extensively on issues of importance to the autism community. Additionally, Zosia conducts research, informs policy, and teaches disabled youth and adults community living skills from a self-advocacy perspective.

The IACC Chronicles: Experiences at Interagency Autism Coordinating Meetings

Paula C. Durbin-Westby

The Interagency Autism Coordinating Committee is mandated by Public Law 109-416, also known as the "Combating Autism Act." The Committee is headed by the director in NIMH and includes both Federal and public members. This presentation discusses how the IACC is structured and some of the tasks mandated by law. Various methods for collecting information, such as RFIs (Requests for Information), written and oral comments, will be discussed. In my written and spoken commentary to the Committee, I have stressed focusing on research that will have practical outcomes for autistics, often using the text of the law to make my points.

Paula C. Durbin-Westby is an autistic and disability rights activist. She has presented comments at the Interagency Autism Coordinating Committee both as a representative of the Autistic Self Advocacy Network and as a concerned autistic citizen and taxpayer.  She is an autistic community member of AASPIRE, the Academic Autistic Spectrum Partnership in Research and Education.

Healthy vs. Abusive Relationships

Katie Miller

Learn key points to recognizing the difference between healthy and abusive relationships.  The topic is not limited to couples' healthy or abusive relationship dynamics can occur in all interpersonal relationships including family, friends and co-workers.  Become aware of the various forms and disguises that abuse takes and know what to do if you or someone you love is a victim. Learn how to recognize a true friend and learn how to be a healthy social partner in all your interactions.

Katie is a twenty-five year old woman on the autism spectrum. Since being diagnosed 3 years ago, she has become active in the autistic rights movement and loves participating in autistic culture. Katie is a professional artist. Her website is www.artistkatiemiller.com

WEDNESDAY, JULY 1

Coming Out: Informing people about your diagnosis

Winnefred Ann Frolik

At some point we all have situations where we need to inform the new people we meet; be they potential roommates, acquaintances, co-workers, employers, etc. about being on the Autistic spectrum and what that means. I'm here to talk about some suggestions and techniques for when that moment arrives that we may better communicate the truth about ourselves to NTs.

Winnefred Frolik was diagnosed with Asperger's Syndrome in college and after graduation immediately began working in the non-profit sector.  She is proud to be serving her third year with the Americorps program, and is currently the staff writer for the Jewish Foundation for Group Homes, an organization that provides independent living for adults with developmental disabilities.  She has a dual major in Creative Writing and English Literature from the University of Pittsburgh, and is presently in the stages of completing a book on women in the U.S. Senate.  For the last couple of years she's been involved in lobbying efforts for the autistic community, as well as educating Americorps personnel about autism and disability issues. She currently lives alone in a studio apartment with Ebony, her much belove d Tortoiseshell kitty she adopted from a shelter.

Emerging Autism Research and Its Impact on the Autistic and Allied Community: Reflections and Impacts

Scott Michael Robertson
Penn State University, Ph.D. Candidate in Information Sciences and Technology
The Autistic Self Advocacy Network, Vice President

This presentation will share a discussion of emerging autism research and its impact on the autistic and allied community. The presentation will include four sections: a) an overview of major changes in autism research and funding, b) a discussion of emerging applied research in autism, c) a discussion of updates to community-based participatory research with autistic people, and d) a discussion of emerging autism research in the areas of diagnosis, neurology, physiology, and genetics that will impact the autistic and allied community. The presenter will offer an in-depth discussion and commentary throughout the presentation about recent research studies and their impact, as well as shifts in research funding and the growth of applied research centers on autism and organizations, such as the new scientific think tank for research on autistic adults. The presentation will also incorporate some related research from the broader neurological and developmental disability community.

Scott Michael Robertson is an autistic adult and a Ph.D. Candidate in the College of Information Sciences and Technology at Penn State University (main campus). His research there involves disability studies and human-computer interaction/computer-supported collaborative work (CSCW). Scott serves as the vice president of the Autistic Self Advocacy Network and as a member of the Advisory Board of the Pennsylvania Department of Public Welfare's Bureau of Autism Services. He has given many presentations on autism and disabilities at conferences, schools, and organizations, including 9 keynotes.

Acknowledging autistic adulthood: Parent transition planning

Jim Sinclair

There is a lot of information available for parents, about planning for their autistic children's transition to adult living. But as children become adolescents and then adults, their parents also go through transitions: from being caregivers of helpless infants, to being guides and supervisors of children who are beginning to explore their own worlds, to--hopefully--being respectful supporters and allies of self-directing adults. This workshop will address the information and skills and supports that parents need, in order to make their own successful transition from being parents of children to being parents of adults. If you're a parent facing your child's transition to adulthood, or if you're an adult or soon-to-be adult whose parent needs support in learning to be the parent of an adult, this workshop is for you.

Jim Sinclair has a B.A. in psychology, M.S. in counseling, and postgraduate education in developmental and child psychology. Jim is a Certified Rehabilitation Counselor who has worked professionally with autistic children, adolescents, and adults, and has provided training seminars for teachers and therapists of autistic children. As an autistic adult, Jim has extensive experience in autistic self-advocacy, having pioneered the use of service dogs for autistic people in the late 1980s; co-founded Autism Network International in 1992 and been its coordinator since that time; and coordinated Autreat, the first annual gathering of its kind designed by and for autistic people, since 1996. Jim's writings have been widely reprinted and translated into many languages. Jim is a popular and dynamic speaker at autism conferences nationally and internationally.

THURSDAY, JULY 2

Searching for Autistic Mentors: What is Needed for Our Autistic Children.

Barbara Stern Delsack, MSPA/CCC
Assistive Technology Consultant

There exists a wide gap between autistic children and their neurotypical families and the autistic adult communities.This presentation will share with the participants a proposed  mentoring program with a unique differences from a more neurotypical mentoring program in the receptive and expressive communication components and milieu for interactions. It is the hope of this presenter that Autreat participants will help "blaze a trail" on the Ethernet that begins a program offering a mentor to each and every autistic child and a support to their family.

Barbara Stern Delsack, MSPA/CCC, is a Speech-Language Pathologist and Assistive Technology Specialist with Montgomery County Public Schools, Maryland, on the InterACT Team. Mrs. Delsack has worked in the area of Autism for the past 22 years. In addition, she is an Adjunct Professor at Montgomery College and at The George Washington University. Mrs. Delsack serves on the Board of Directors Autism National Committee (AUTCOM).

Reducing and Avoiding Self-Injury:  What I've Learned from Other Autistic People

A M Baggs

Whether the reasons are from inside or outside ourselves, many autistic people self-injure and want to stop or at least reduce this.  This workshop aims to teach a large number of strategies for dealing with this, and show how to adapt them to a wide variety of individual strengths and weaknesses.  The presenter learned far more of these strategies within a few years of meeting and talking to other autistic people, than she learned in a childhood and adolescence spent in several forms of therapy that tried to address this problem among others.  The strategies discussed in the workshop will be drawn from the concrete experiences of lots of other autistic people, rather than from an established and packaged form of therapy or theory about autism. Autistic people who want to stop self-injury are the main audience, but other autistic people as well as family, professionals, and friends, could also learn a lot.

Amanda is an autistic person who has experienced self-injury most of her life, and who has been in a number of different sorts of therapy.  However, she did not learn even a little bit of how to stop herself from doing these things, until she encountered and learned from other autistic people.  Applying those ideas over the course of a few years, as well as figuring out many of her own, she went from severe self-injury to infrequent self-injury.  She also stopped doing a lot of other impulsive things she hadn't wanted to do.  She wants to pass these strategies on to other people who might not have encountered autistic-friendly ideas on how to stop self-injuring.

Tensions Within the Disability Community

Ari Ne'eman
President
The Autistic Self Advocacy Network

The autism community is familiar with conflicts between the parent and self-advocate community, most notably on issues such as causation, cure and the ethics of "autism treatment". However, the disability community at large has far broader controversies that are relevant to the autism and autistic communities as well. This presentation will discuss issues of controversy in the cross-disability community. Among the issues to be discussed include the divide between the physical and mental disability world, controversies between separatist and assimilation-oriented visions of the future of disability rights and various inter-community rivalries, such as that between the National Federation for the Blind and the American Council of the Blind, between the oralist and the signing deaf community and between the various camps in the mental health consumer movement. A presentation of controversies of similar importance in the provider and family stakeholder groups will also be discussed. Consideration will be given in each instance to how this situation affects the autism and autistic communities and how it can be analogized.

Ari Ne'eman is the Founding President of the Autistic Self Advocacy Network, a non-profit organization of adults and youth on the autism spectrum. He is currently studying Political Science and at the University of Maryland-Baltimore County as a Sondheim Scholar of Public Affairs. Ari is an Asperger's autistic and has been active in the autistic culture, neurodiversity and disability rights movements. He first became involved in self-advocacy as a high school student, arguing for his own inclusion and access to high level academic coursework. He later became involved in disability and education policy advocacy. He recently served as the Patricia Morrissey Disability Policy Fellow at the Institute for Educational Leadership. Ari is on the board of TASH and the Autism National Committee and is currently the Vice Chair of the New Jersey Adults with Autism Task Force. Ari served as the Policy Workgroup Leader for the Youth Advisory Council to the National Council on Disability, the Public Policy Chair for the New Jersey Coalition for Inclusive Education and a member of the Steering Committee of the New Jersey Olmstead Implementation and Planning Advisory Council advising the NJ Department of Human Services on de-institutionalizing adults with developmental disabilities in the wake of the landmark Olmstead v. L.C. Supreme Court case. Amongst other things, his advocacy work has included coordinating the campaign to stop the NYU Child Study Center's Ransom Notes ad campaign, achieving representation for autistic self-advocates in numerous state policymaking bodies and arranging for the inclusion of Augmentative and Assistive Communication (AAC) technology in the insurance mandate component of the Autism Treatment Acceleration Act. In his capacity as President of the Autistic Self Advocacy Network, he organizes social/support networks for youth and adults on the autism spectrum, promotes self-advocate involvement in the policymaking process and regularly presents and advises on issues relating to the autism spectrum, disability policy, special education and the neurodiversity movement.

FRIDAY, JULY 3

"Ask an NT" Panel

Panelists TBA