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| ASA's 37th National Conference on Autism Spectrum Disorders (July 13-15, 2006) |
ASA Homepage |
| 209.0: Thursday, 13 July 2006: 11:00 AM-12:15 PM | |||
| We Are Family: Parents on the Spectrum Speak Out | |||
| We are parents of autistic kids -- but with a difference: we are each also individuals at various points on the spectrum ourselves. As a panel, we will explore how that difference factors into how we relate to our kids (autistic and non) and our partners, into how we advocate for our kids and ourselves, and into our varied perspectives on autism in general.
This session is dedicated to the memories of Patricia Clark, ASA Greater Georgia chapter, and Eileen Torchio. | |||
| Presenters: | - Valerie Paradiz, PhD, is the author of Elijah's Cup: A Family's Journey into the Community and Culture of High-Functioning Autism and Asperger's Syndrome (Jessica Kingsley Publishers, 2005). She is the founder and executive director of the School for Autistic Strength, Purpose and Independence in Education (ASPIE), which has been featured in the New York Times and Redbook Magazine, as well as on Japanese Public Television. An adult diagnosed with AS and mother of a teenager with HFA, Paradiz is on the board of directors of the Global Regional Asperger Syndrome Partnership (GRASP).
- BIO: Sondra Williams I am diagnosed with Autism spectrum. I've been married for 19 years; parent four children diagnosed with Asperger’s. I am self employed and use my abilities to find ways of meaningful employment for my own self. I am the author of the book titled: Reflections of Self, and a DVD titled; Define Me. I serve as a board member of the autism society of Ohio, and serve on the advisory board for OCALI. I am also a Parent Advocate trainee through the LEND program of Ohio State University. - Lisa 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-at-large of the Massachusetts chapter of the ASA, 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). - Dena Gassner, MSW studied early intervention and diagnostic evaluation at Cincinnati Children’s Hospital. She has worked in mental health/school advocacy including work for the Kentucky Protection and Advocacy and ARC (12 years). Presently, Dena provides autism consultation and training across the US. She is a member of the advisory board for GRASP; worked on ASA’s conference planning committee. Dena is the second of three generations of people with ASD’s in her family. Many seek her common sense and uncanny insight into seeking wholeness and authenticity in charging toward a life not separate from, but wholly embracing life with autism. - Jerry is an AS adult, father of a non-autistic daughter, and partner of a non-autistic spouse. He is a member of the Asperger's Association of New England, a software engineer by profession, and a chef by avocation. - Michael Bourke is an AS adult, and father of 4 children, ranging from AS to non-autistic. He has had various vocations in his working life, ranging from medicine to engineering to construction -- but considers the most important thing to be relationships. | ||
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A panel presentation in the following format: 1. Opening remarks by panelists (5 min. each) Panelists will: o Summarize their own background & family situation, e.g. · how and when they arrived at a diagnosis (some of us, in the process of our kids' diagnoses!) · brief profiles of their kids, partners, and other significant family members o Describe 1-2 key positives or negatives that arise for them specifically because they're on the spectrum, e.g. · in the course of how they relate to their kids on the spectrum · in the course of how they relate to their non-autistic kids, if any · in the course of how they relate to their partners (who may be on the spectrum or non-autistic) · in the course of how they relate to extended family · in the course of how they relate to people outside the family · in situations where they are advocating for their kids in school settings · in situations where they are advocating for their kids in extracurricular settings · in situations where they are participating as a family in a larger group or community Some possible positives: · better able to understand the thinking/emotions/behavior of their kids on the spectrum · better able to act as an interpreter or mediator for their kids · better able to demystify autistic ways for non-autistic people Some possible negatives: · they are not taken seriously or "written off" when they disclose their diagnosis · their diagnosis is not taken seriously because if they're parenting kids, they must obviously be "doing so well" · divergent styles or instincts become an obstacle between them and partners, or between them and their (non-autistic, or maybe even autistic) kids · some aspects of parenting are exhausting from a physical, emotional, or sensory perspective · they find it difficult to relate to other, non-autistic parents, or to participate in social contexts with other, non-autistic parents 2. Some brief discussion among panelists of implications for parents who don't have a diagnosis but who are in the broader autism phenotype (have some autistic traits): o What are the benefits of identifying and leveraging their autistic traits in how they relate to their kids? o What are the difficulties they might encounter by doing so? o What are the factors inhibiting them from doing so? o What could be done about those factors? 3. Audience questions and discussion Learning objectives: Attendees will get an introduction to some of the intergenerational aspects of autism, through the panelists' descriptions of how they relate to their kids and partners. Attendees will get some food for thought about how they might beneficially leverage the commonalities they, their partners, or other family members might share with their autistic family members in how they relate to them, and advocate for them. Attendees will gain insight into how some of their peers on the spectrum have dealt with some of the difficulties inherent in parenting and family dynamics. Contribution to best practices: The session will identify the benefits of affirming and leveraging the commonalities that parents and family members in the broader phenotype – a substantial fraction of the parent population, by all measures – share with their autistic family members. It will bring to light some of the issues faced by parents who are on the spectrum themselves in advocating for their autistic children, and in the dynamics of their relationships with their children (autistic and non-autistic), partners, extended family, and community. It will suggest approaches to address some of those issues and produce favorable outcomes. |
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