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EPISODE 19
Disclosure and Self-Advocacy: A Discussion with Dr. Stephen Shore

Play the Episode…

…and Continue the Discussion

Do you have a book or podcast club? If so, you may use this discussion guide to facilitate a conversation about this episode.

1) Stephen discusses the first type of disclosure – talking to an autistic child or adult about their autism. He has developed a four-step process for doing so. What are the steps, and why is it important to follow such a process? How has this discussion changed the way you will work with your students or your child in the future?

2) Stephen also discussed as a three-step process for self-advocacy. What are these three steps? As part of this process, he also makes a distinction between partial and full disclosure. Given an example and discuss why this distinction is important.

3) How are the processes of disclosure and self-advocacy emblematic of the dramatic changes that have happened in the world of autism over the past 1-2 decades? Why do you believe that some parents are uncomfortable with disclosure, and some professionals are hesitant to embrace what we can learn from autistic people?

Featuring

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STEPHEN SHORE

Diagnosed with “Atypical Development and strong autistic tendencies” and “too sick” for outpatient treatment Dr. Shore was recommended for institutionalization. Nonspeaking until 4, and with much support from his parents, teachers, wife, and others, Stephen is now a full time professor at Adelphi University and adjunct at NYU Steinhardt School of Culture, Education, and Human Development, focusing on aligning best practice in supporting autistic people to lead fulfilling and productive lives. In addition to working with children and talking about life on the autism spectrum, Stephen is an internationally renowned educator, consultant and author on lifespan issues pertinent to education, relationships, employment, and self-advocacy. His most recent book College for Students with Disabilities combines personal stories and research for promoting success in higher education. A current board member of Autism Speaks, the Organization for Autism Research (OAR), American Occupational Therapy Foundation (AOTF), president emeritus of the Asperger/Autism Network, and advisory board member of the Autism Society, Dr. Shore also serves on the advisory boards of AANE, and other autism related organizations.

“Being autistic provides me a unique way of seeing the world! I’ve given over 1,000 presentations in 51 countries across 6 continents and 48 of the United States.”

Show Notes

Disclosure and self-advocacy for autistic people has become two of the topics of greatest interest in the autism self-advocate community, and for professionals, parents and family members as well. Although there has been much discussion, it is difficult to find specific guidance that is informed by people on the spectrum. We discuss these issues with Dr. Stephen Shore, who has provided some of the most specific and thoughtful guidance based on his own experience on the spectrum, and as one of the preeminent scholars in supporting people autistic and disabled children and adults.

For more of Stephen’s work:

Stephen’s Website

Instagram: @stephenmarkshore191

Twitter: @tumbalaika

Facebook

LinkedIn

ACKNOWLEDGMENTS

Music

Matt Savage, courtesy of Savage Records

Matt Savage is an autistic jazz musician, composer, and bandleader. Matt has collaborated with jazz greats like Chick Corea, the Ellington All Stars, Chaka Khan, Wynton Marsalis, Bobby Watson, Clark Terry, Jimmy Heath, Jason Moran, Arturo O’Farrill, John Pizzarelli, Joshua Redman, Terri Lyne Carrington, Jon Faddis, Jerry Bergonzi. Donny McCaslin, and more. He has recorded more than a dozen records and graciously contributes the music for Uniquely Human.

Production and Sound Design

ELEVATEDSTUDIO

Uniquely Human: The Podcast is produced, engineered, and edited by Elevated Studio in Denver, Colorado. Owned and operated by co-host Dave Finch, Elevated Studio produces digital media assets and content strategies for the electronics, entertainment, and lifestyle industries.