Winter 2017 CME Voices Newsletter (PDF)
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Iacc Strategic Plan for Autism Spectrum Disorder 2018-2019 Update
INTERAGENCY AUTISM COORDINATING COMMITTEE strategic plan for autism spectrum disorder 2018-2019 update INTERAGENCY AUTISM COORDINATING COMMITTEE strategic plan for autism spectrum disorder 2018-2019 update IACC STRATEGIC PLAN FOR AUTISM SPECTRUM DISORDER 2018-2019 UPDATE COVER DESIGN Medical Arts Branch, Office of Research Services, National Institutes of Health COPYRIGHT INFORMATION This report is a Work of the United States Government. A suggested citation follows. SUGGESTED CITATION Interagency Autism Coordinating Committee (IACC). IACC Strategic Plan for Autism Spectrum Disorder (ASD) 2018-2019 Update. July 2020. Retrieved from the U.S. Department of Health and Human Services Interagency Autism Coordinating Committee website: http://iacc.hhs.gov/strategic-plan/2019/. II IACC STRATEGIC PLAN FOR AUTISM SPECTRUM DISORDER 2018-2019 UPDATE TABLE OF CONTENTS About the IACC.................................................................................................................................................................................................. IV Introduction ....................................................................................................................................................................................................... VI Chapter 1: Highlights from IACC Full Committee Meetings 2018-2019............................................................................................. X Chapter 2: IACC Working Group Activities: Improving Health Outcomes for Individuals on the Autism Spectrum -
HHS Announces Appointment of New Membership and New Chair for the Interagency Autism Coordinating Committee
For Immediate Release Contact: Office of Autism Research Coordination/NIH October 28, 2015 E-mail: [email protected] HHS Announces Appointment of New Membership and New Chair for the Interagency Autism Coordinating Committee The U.S. Department of Health and Human Services (HHS) today announced the appointments of new and returning members to the Interagency Autism Coordinating Committee (IACC), reauthorized under the Autism CARES Act. After an open call for nominations for members of the public to serve on the committee, Secretary of Health and Human Services, Sylvia M. Burwell, appointed this group of individuals to provide her with advice to advance research, strengthen services, and increase opportunities for people on the autism spectrum. The public member appointees include three adults on the autism spectrum, several family members of children and adults on the autism spectrum, clinicians, researchers, and leaders of national autism research, services, and advocacy organizations. Many of the appointed individuals serve dual roles, dedicating their professional careers to helping people on the autism spectrum because of their personal experiences with autism spectrum disorder (ASD). The first meeting of the new committee will take place on November 17, 2015 in Rockville, Maryland. In addition to the new public members, the IACC will have a new chair when it reconvenes. Dr. Thomas Insel, who served as the Director of the National Institute of Mental Health (NIMH) and as Chair of the committee for more than a decade, announced his planned departure for Google Life Sciences in at the end of October 2015. Dr. Bruce Cuthbert, who will become Acting Director of NIMH on November 1, has been appointed to serve as the IACC Chair over the next year. -
A Memoir of Brain Change and Emotional Awakening by John Elder Robison
Discussion Guide Switched On: A Memoir of Brain Change and Emotional Awakening By John Elder Robison 1. Robison was diagnosed with Asperger’s at age forty. He claims that his “diagnosis was a huge relief and a source of empowerment” What does he mean? 2. In Chapter 6, Robison tells the story of being the first responder at the scene of a car accident. He is not emotionally affected by the situation. “Before TMS, all I knew was that I was a good guy in a crisis because my logical mind took charge.” He continues, “Even without feeling the expected emotions, I did the right thing… My sense of right and wrong was quite well developed, and I did the best I could for other people. It’s just that my senses and abilities were limited, so I didn’t always do what they expected.” Did you find this surprising? Have you known people whose facial expressions struck you as odd or overly blank? How did it make you feel, and how did you interpret their behavior? 3. Why did Transcranial Magnetic Stimulation (TMS) appeal to the author? How is the title relevant to the story? 4. In Chapter 14, Robison describes his reaction to his first TMS treatment after leaving the research hospital and driving home in his car listening to music. Describe the significance of this episode. 5. Robison often says that before TMS, he could relate better to machines than to people, yet, he wasn’t void of feelings, and he felt socially isolated. Discuss Robison’s relationships before and after TMS. -
Praise for Switched On
Praise for Switched On ‘Astonishing, brave…reads like a medical thriller and keeps you wonder- ing what will happen next…[Robison] takes readers for a ride through the thorny thickets of neuroscience and leaves us wanting more. He is deft at explaining difficult concepts and doesn’t shy from asking hard questions. This is a truly unusual memoir—both poignant and scientifically important.’ Washington Post ‘Robison’s writings are…logical, restrained, lacking in self-pity… Like Awakenings, this book raises deep philosophical problems.’ The Times ‘Fascinating for its insights into Asperger’s and research, this engrossing record will make readers reexamine their preconceptions about this syn- drome and the future of brain manipulation.’ Booklist ‘Like books by Andrew Solomon and Oliver Sacks, Switched On offers an opportunity to consider mental processes through a combination of powerful narrative and informative medical context.’ BookPage ‘A fascinating companion to the previous memoirs by this masterful storyteller.’ Kirkus ‘John Elder Robison is an extraordinary guide, carefully elucidating the cutting-edge science behind this revolutionary new brain therapy, TMS, alongside the compelling story of the impact it has on his relationships, his thinking and emotions, and indeed his very identity. At the heart of Switched On are fundamental questions of who we are, where our identity resides, of difference and disability and free will, that are brought into sharp focus by Robison’s lived experience.’ Graeme Simsion, author of The Rosie Project -
Office of Diversity & Equal Opportunity April/May, 2016
Office of Diversity & Equal Opportunity April/May, 2016 VOICES William & Mary is committed to inclusive excellence. our focus. This work is not aligned with a single office, Building on our core value of diversity, we strive to be a but the shared responsibility of all. We define diversity place where equity and inclusion are integral parts of all in its broadest terms and celebrate how this makes that we do. We work to create a community that is William & Mary a better institution. representative of individuals with different backgrounds, ___________________________________________ talents and skills. We work to ensure that William & VOICES is the monthly e-newsletter, and provides an Mary is a place where all faculty, staff, students and update on the university's diversity efforts in facilitating alumni feel supported and affirmed. From classroom and supporting diversity and inclusion. Each issue shares discussions and study abroad experiences, to equitable the good work of academic and administrative departments, students, affinity groups and more. Past and transparent recruitment, hiring and promotion issues are available at the Diversity & Equal Opportunity processes, inclusive excellence is website: www.wm.edu/offices/diversity/voices/index. Neurodiversity Innovative Initiative at W&M Founded in 2012, William & Mary’s neurodiversity initiative is a unique effort to support students on our campus, to advocate for appreciating the value of neurodiversity, and to offer a model to other colleges and universities. Neurodiversity is an emerging philosophy and civil rights movement that seeks to acknowledge and appreciate the wide variety of human neurologies including Autism, ADHD, and others on par with gender, ethnicity or sexual orientation instead of seeing them at pathologies. -
Articles and Books About U.S, for Example, That People Will Make Eye Contact As They Have Autism
RTICLE A EER EVIEWED UBMISSION P R S Neuropluralism Alexandra Perry MEd EdD (candidate) Department of Philosophy, Bergen Community College Lyndhurst, NJ, USA the indications that a person may fall within the autism spectrum Abstract is the unwillingness or inability to make eye contact. Parents of autistic children are more oft en than not familiar with the results Autism is currently one of the most pressing issues in of developmental evaluations noting a lack of eye contact, and healthcare. Scholarship on the topic is commonly found many autistic children are sent squirming with the words “look among psychologists, educators, and, to some extent, me in the eye…” Autistic adults, too, oft en note that they tire of 1 philosophers. Surprisingly little scholarship, however, being reminded to make eye contact. has focused on the ethical issues relevant to autism. Bioethicists ought to give autism consideration, though John Elder Robison (2007) wrote a well-known memoir on the this may prove to be more diffi cult than it seems at fi rst experience of growing up autistic. Robison remembers people glance. The neurodiversity movement is likely to be noting his lack of eye contact with such comments as “You look credited with starting discussions on autism and related like a criminal,” or “nobody trusts a man who won’t look them in issues of justice and ethics, but perhaps this movement the eye.” (pp. 2) Robison also notes that: has set its sights short. Rather than looking for recognition ‘[S]ociopath’ and ‘psycho’ were two of the most common of neurological divergence, a society that is grounded in fi eld diagnoses for my look and expression. -
Autism Spectrum Disorders: Selected Readings and Resources
AUTISM SPECTRUM DISORDERS: SELECTED READINGS AND RESOURCES Written and Compiled by Kelly Register Brown, MD and The Staff of the Center for Autism Spectrum Disorders, Children’s National Medical Center 15245 Shady Grove Road, Suite 350 (South Building), Rockville, MD 20850; 301-765-5430 www.childrensnational.org Copyright © 2010 Children's National Medical Center All Rights Reserved This book is designed to be a resource for parents as they navigate the journey of raising a child with special needs. We have found that well-informed parents are their children’s best advocates and teachers. We ourselves have learned many things from parents as they have advocated for their special children in their schools and communities. We hope this book will provide help in this process. This book is dedicated to the families and children who have enriched our lives at the Center for Autism Spectrum Disorders. This book can be found online at the website of the Center for Autism Spectrum Disorders at Children’s National Medical Center (go to www.childrensnational.org, search for "Center for Autism Spectrum Disorders,” and click on “Resources for Families”). ACKNOWLEDGEMENTS Kelly Register Brown, MD; Jenifer Walkowiak, PhD; Laura Anthony, PhD; and Lauren Kenworthy, PhD wrote and compiled this book. We thank the many individuals and organizations who allowed us to reprint their material here. We gratefully acknowledge the contributions of the Parent Advisory Committee of the Center for Autism Spectrum Disorders at Children’s National Medical Center. This project was funded in part by the Maternal and Child Health Bureau (MCHB) of the Health Resources and Services Administration (HRSA) through the Leadership Education in Neurodevelopmental Disabilities (LEND) program (5-T73-06-001) at Children’s National Medical Center, Washington, DC. -
Seaver Autism Center Researchers at IMFAR 2014
Vol.5, No.2, 2014 IN THIS ISSUE Seaver Autism Center Researchers SEAVER AUTISM CENTER at IMFAR 2014 1 RESEARCHERS AT IMFAR 2014 very year, autism researchers from around the Seaver Autism Center, was featured at the NEW RESEARCH INTERN BEGINS the world gather at the International annual IMFAR press conference, and the Seav- SECOND CAREER EMeeting for Autism Research (IMFAR) er Center hosted the annual Seaver IMFAR sponsored by the International Society for Au- Reunion Reception for current and former SEAVER AUTISM CENTER tism Research. This year in Atlanta, GA, over members, friends, and collaborators. See photos 2 RESEARCHERS ten current and former Seaver Autism Cen- on page 4. AT IMFAR 2014 (CONTINUED) ter researchers, including students and junior faculty, were featured in poster and oral pre- RESEARCH PRESENTATIONS RECENT EVENTS sentations. Joseph Buxbaum, PhD, Director of Researchers presented on a range of topics from genetics to animal models and clinical trials. 3 NEW GRANT AWARD Teresa Tavassoli, PhD, Seaver Postdoctoral NEW RESEARCH INTERN (CONT.) Fellow, gave an oral presentation titled, “How Can We Robustly Measure Sensory Reactivity; ANNUAL REUNION RECEPTION A New DSM-5 Criterion for Autism Spectrum 4 Disorder.” SAVE THE DATE 18TH ANNUAL Karim Ibrahim, MS, graduate student at the SEAVER AUTISM University of Hartford and former clinical psy- CENTER ADVANCES IN AUTISM chology trainee at the Seaver Autism Center, also CONFERENCE gave an oral presentation titled, “Here’s Looking Hala Harony-Nicolas, PhD, Seaver Fellow and Instructor at You: Neural Effects of a Cognitive-Behavioral in the Department of Psychiatry, gave an oral presentation titled, “A novel Shank3-deficient rat model to understand the neural basis of autism.” Continued on next page New Research Intern Begins Second Career e would like to introduce Ms. -
Where Do I Start? What Do I Focus
Where do I start? What should I focus on? Chris Edmonds Autism Ed www.autismed.com.au Google Autism – 20 million sites Gain Knowledge about ASC Join associations Access resources Read books/articles Attend Professional Development Accessible and Reliable Information • Amaze (resources) – fact sheets www.amaze.org.au • Sue Larkey – tip sheets www.suelarkey.com • National Autistic Society (UK) - info and tip sheets www.nas.org.uk • Asperger’s Vicoria – www.aspergersvic.org.au • Autism Help – www.autismhelp.info Newsletters Amaze – eSpectrum and Spectrum magazine Sue Larkey E-newsletter and ‘Making it a Success with Sue Larkey’ newsletter Autism Spectrum Education Services(ASES) e-NEWS www.autismspectrumeducation.com I recommend these books… All Cats Have Asperger Syndrome, Kathy Hoopman The Reason I Jump, Naoki Higashida Nuggets of Gold/The Hidden Strengths of Autism, Roger Langsdon Ten Things Every Child With Autism Wishes You Knew, Helen Notbohm From Anxiety to Meltdown, Deborah Lipsky The Curious Incident of the Dog In The Night-Time, Mark Haddon. Listen to people on the spectrum… Amaze – Hear and Share evenings (free talks available to members) Wendy Lawson, Donna Williams, Roger Langsdon, Lisa Domican (The Grace App), Chris Varney, Mark and Leanne Hogan DVD – Temple Grandin Look Me In The Eye, John Elder Robison Autobiographies and memoirs – jkp.com (memoirs) Parents as Partners Information from parents – • Family structure • Communication skills (verbal, non verbal) • Communication supports (PECS, sign) • Social skills • Processing -
Asperger Syndrome
Recommended Reading for adults and teens with Asperger Syndrome These titles are available to members in our Lending Library Compiled by the Autism Society of Southeastern Wisconsin. Ask about membership, which includes library privileges: 414-988-1260 [email protected] www.assew.org If you have been diagnosed with Asperger Syndrome or suspect It can be helpful to know that you’re not the only one dealing that you may have an Autism Spectrum Disorder, here are some with this. Please join us at our next Adults on the Spectrum books in our Lending Library that you might find informational Support Group, held on the 3rd Wednesday of each month, and helpful. 6:30-8:30 p.m. at our office. 100 Things Guys Should Know by Bill Zimmerman Developing Talents by Temple Grandin, Kate Duffy, Tony Attwood A 5 Is Against the Law! Social Boundaries by Employment for Individuals With Asperger Syndrome or Non-Verbal Karie Dunn Buron Learning Disability by Yvona Fast Ask and Tell: Self-Advocacy and Disclosure for People On the Autism Freaks, Geeks, and Asperger Syndrome by Luke Jackson and Spectrum by Stephen M. Shore and Temple Grandin Tony Attwood Asperger Download: A Guide to Help Teenage Males with Asperger The Guide to Dating for Teenagers with Asperger Syndrome by Syndrome Trouble-Shoot Life’s Challenges by Jeannie Uhlenkamp Josie and Damian Santomauro How Rude! by Alex J. Packer and Jeff Tolbert Asperger Syndrome & Employment: What People with Asperger Syndrome Really Really Want by Sarah Hendrickx How To Find Work That Works for People with Asperger Syndrome by Gail Hawkins Asperger Syndrome: An Owner’s Manual 2 for Older Adolescents and Adults by Ellen S. -
First-Person Accounts of Autism
TRANSITION CLINIC RECOMMENDED MEDIA: FIRST-PERSON ACCOUNTS OF AUTISM The following are written/created by or from the perspective of a person with autism. These people and characters represent a large range of strengths, challenges, abilities, and ways of communicating. Books Non-Fiction: Autobiographies and Memoirs • The Reason I Jump: The Inner Voice of a Thirteen-Year-Old Boy with Autism by Naoki Higashida • Thinking in Pictures: My Life with Autism by Temple Grandin • Look Me in the Eye: My Life with Asperger’s by John Elder Robison • Nobody Nowhere: The Extraordinary Autobiography of an Autistic by Donna Williams • Freaks, Geeks and Asperger Syndrome: A User Guide to Adolescence by Luke Jackson & Tony Attwood • Ido in Autismland by Ido Kedar; also a blog: http://idoinautismland.com • Beyond the Wall: Personal Experiences with Autism and Asperger Syndrome by Stephen Shore Fiction: Novels • M is for Autism by The Students of Limpsfield Grange School & Vicky Martin • The Rosie Project & The Rosie Effect by Graeme Simsion • The Curious Incident of the Dog in the Nighttime by Mark Haddon* • Marcelo in the Real World by Francisco Stork* *The main characters of these books have autistic-like traits and are thought by many to have autism, but no formal diagnosis is stated in the books. Blogs • Musings of an Aspie: https://musingsofanaspie.com • Autistic Hoya: http://www.autistichoya.com • Rudy Simone: http://www.rudysimone.net/blog/ ; http://www.help4aspergers.com/index.html • AANE Blog: http://www.aanenetwork.org • Dillan Barmache: https://typing4change.com -
Changing Conversations Around Autism: a Critical, Action Implicative Discourse Analysis of U.S
CHANGING CONVERSATIONS AROUND AUTISM: A CRITICAL, ACTION IMPLICATIVE DISCOURSE ANALYSIS OF U.S. NEURODIVERSITY ADVOCACY ONLINE by JESSICA M.F. HUGHES B.A., Boston University, 2000 M.A., Lancaster University, U.K., 2004 A thesis submitted to the Faculty of the Graduate School of the University of Colorado in Partial fulfillment of the reQuirement for the degree of Doctor of Philosophy DePartment of Communication 2015 This thesis entitled: Changing Conversations Around Autism: A Critical, Action Implicative Discourse Analysis of U.S. Neurodiversity Advocacy Online written by Jessica Marie Fridy Hughes has been approved for the Department of Communication Robert T. Craig Karen Tracy Lisa A. Flores David Boromisza-Habashi Amy C. Wilkins Date 5/6/2015 The final copy of this thesis has been examined by the signatories, and we Find that both the content and the form meet acceptable presentation standards Of scholarly work in the above mentioned discipline. IRB protocol # __13-0600_______ iii Hughes, Jessica M.F. (Ph.D., Communication) Changing Conversations Around Autism: A Critical, Action Implicative Discourse Analysis of U.S. Neurodiversity Advocacy Online Thesis directed by Professors Robert T. Craig and Karen Tracy This dissertation offers a critical, action implicative discourse analysis of neurodiversity (ND) advocacy online. The neurodiversity movement is a contemporary disability rights movement aimed at autism acceptance grounded in an understanding of autism as natural neurological variation. ND advocacy is a site of discursive struggle where advocates work to redefine autism and combat stigma. This study takes a novel, hybrid discourse analytic approach in an effort to understand why ND advocacy is needed and how its emancipatory potential might be developed.