These Tool Kits Are Available from Autism Speaks. 100 Day Kit (Other Languages Available)
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Autism Speaks 2021 Speaker Bios
Autism Awareness Interagency Roundtable April 2, 2021 SPEAKER BIOS Autism Speaks Pamela Dixon, PhD Director, Clinical Services and Inclusion [email protected] Dr. Pamela Dixon’s Autism Speaks portfolio includes serving as the technical lead for the Caregiver Skills Training Program (CST), the Autism Speaks/WHO collaboration that provides training to caregivers of children with developmental delay/disorders. Dr. Dixon also participates in the design and implementation of training materials for Global Autism Public Health (GAPH) initiatives and manages a global advocate network. As a clinical psychologist, Dr. Dixon’s previous work focused on leading clinics in the development of autism diagnostic services. Her research and clinical interests are in building capacity for the improved identification and treatment of children with neurodevelopmental disorders in low-resource settings. Arun Karpur, MD, MPH Director, Data Science and Evaluation Research [email protected] Dr. Arun Karpur is a medical doctor and an epidemiologist specializing in education, healthcare and workforce programs, and policies for people with disabilities and Autism Spectrum Disorders (ASD). Leveraging his extensive expertise in quantitative methods, Dr. Karpur is establishing data science approach in identifying effective practices and programs improving health, well-being, community living, and participation. He is directing evaluation of various Autism Speaks initiatives in public health and supports and services teams. Prior to joining Autism Speaks, Dr. Karpur was a research faculty at Cornell University’s School of Industrial and Labor Relations in the Yang-Tan Institute on Employment and Disability, where he was a co-investigator for a large-scale randomized clinical trial program aimed to improve employment, education, and economic outcomes for youth with disabilities who receive supplemental security insurance. -
How to Do a Test for Coronavirus at Home
How to do a test for Coronavirus at home An autism-friendly guide to testing your child or young person 2 Ambitious about Autism How to do a test for Coronavirus at home If your child or young person has symptoms, you should order a home test for Coronavirus. The home testing kit for Coronavirus is a swab test. The test is invasive, and swabs are taken from inside the nose and throat. Some autistic children and young people • Use a now and next visual where the ‘next’ may find the home testing kit distressing. side is an activity that your child enjoys, something that will motivate them to It is important to make adjustments to complete the Coronavirus home testing kit support your child and ensure the test is • Ask them to blow their nose to ensure taken safely and accurately. other bacteria doesn’t interfere with the test To relieve anxiety, you can use our Coronavirus home testing visual stories • To prepare yourself, wash your hands with for children and young people. soap for 20 seconds or use hand sanitiser. • To prepare your environment, clean the There are several ways you can prepare surface before you put the home testing your child for the test: kit down. • If appropriate, allow your child to support their stress or anxiety by playing with their favourite toy or stimming toy during the test • Put their favourite programme on so they can watch during the test • Play relaxing music during the test • Your child or young person might prefer to watch or close their eyes as you take swabs, give them the option Ambitious about Autism An autism-friendly guide to testing your child or young person 3 There are four steps to the Coronavirus home testing kit. -
Why We Oppose Autism Speaks
Why We Oppose Autism Speaks Autism Speaks, despite its name, does not speak for autistic people. When polled, 98% of autistic adults oppose Autism Speaks –and there is a massive global movement by autistic people and allies to stop Autism Speaks. In fact, regardless of the many differences among autistic advocates about politics and advocacy, there is one view we pretty much ALL agree on: that Autism Speaks is a hate group. Some reasons: Autism Speaks has allocated hundreds of millions of dollars towards “eugenics” projects that may seek to prevent autistic people from being born. • Autism Speaks is a co-founder of the MSSNG project, a massive, far-reaching project to make a global database of 10,000+ autistic children’s DNA available for use by researchers throughout the world who can fill out a pop-up menu on their website to access it. • The DNA is extracted without the children’s permission. • It is done with the purpose of identifying “autism genes” that will then be used in prenatal testing. • If common genes are identified through this research, people will do prenatal testing and terminate pregnancies if they think there are “signs of autism”. • This project is active in Canada. Autism Speaks Canada has earmarked hundreds of thousands of dollars to its own arm of the project. A group of geneticists in Toronto has also been involved in collecting data for the database. • One of the project’s co-founders, Dr. James Watson, was fired from Cold Spring Harbour Laboratory for his racist remarks about African Americans, intelligence and using eugenics to find “a cure for stupid”. -
Before You Donate to Autism Speaks, Consider the Facts
Before you donate to Autism Speaks, Consider the facts Autism Speaks’ Budget Very little money donated to Autism source: Autism Speaks 990 Non-Profit Tax Exemption Form, 2018* Speaks goes toward helping autistic Research “Awareness” & people and families. Lobbying Only 1% of Autism Speaks’ budget goes towards the “Family Service” grants that are the organization’s means of funding services. Autism Speaks spends 20x as much—20%—on fundraising. Although Autism Speaks has not 27% 48% prioritized services with a practical impact for families and individuals in its budget, its rates of executive pay are the highest in the autism world: some salaries exceed $600,000 a year. 20% 4% Autism Speaks talks about us 1% without us. Fundraising Misc. Family Services Autism Speaks has only 1 autistic person out of a total of 28 individuals on its Board of Directors. Instead, donate to organizations By contrast, 23 out of 28 board members represent that help autistic people: major corporations, including current and former Autistic Self Advocacy Network (ASAN) CEOs and senior executives of PayPal, Goldman provides support, community, and public policy Sachs, White Castle, FX Networks, Virgin Mobile, advocacy, by and for people on the autism spectrum. eBay, AMC Networks, L’Oreal, CBS, SiriusXM, autisticadvocacy.org American Express, S.C. Johnson, and Royal Bank Autistic Women & Nonbinary Network (AWN) of Scotland. seeks to share information which works to build acceptance and understanding of disability, while dispelling stereotypes and misinformation which Autism Speaks’ fundraising strategies perpetuate unnecessary fears surrounding an promote fear, stigma, and prejudice autism diagnosis. against autistic people. -
Boston Medical Center Autism Friendly Initiative: Improving
Boston Medical Center Autism Friendly Initiative: Improving Hospital Experience for Patients with Autism Sarah Qin, MBA1; Shari King, MA1; Lauren Busa, MA1; Julia Goupil1; Daniel Cahill1; Sarabeth Broder-Fingert, MD, MPH2; Marilyn Augustyn, MD1 1Department of Developmental and Behavioral Pediatrics, Boston Medical Center 2Department of Pediatrics, Boston University School of Medicine *We have nothing to disclose Background Identifying the Challenges Targeted Interventions Trainings The prevalence of autism spectrum disorder (ASD) is rising, Staff Survey: In partnership with PLAN parents, the Boston University School of however, there are significant barriers to quality healthcare for Autism Support Checklist (ASC) Medicine and the Goldman School of Dental Medicine, we train patients with ASD. Patients with ASD experience more outpatient Autism Support Checklist Name of Patient: ____________________________ The Autism Support future doctors and dentists how to better interact with patients visits and their annual healthcare costs are higher than patients Date Completed: _________________ Communication Checklist collects with ASD. 1. How does the patient communicate information? without ASD. Patients with ASD encounter high levels of unmet Spoken language Pictures information from Written Words need and lower levels of satisfaction with care. To address these Non-verbal “I will be better able to recognize ASD and adapt to Electronic Communication patients with ASD Gestures issues at Boston Medical Center (BMC), we have launched the Other: ____________________ patient interactions and understand the needs of both 2. What would help the patient understand information? and their caregivers Spoken language Autism Friendly Initiative to improve the healthcare experience for Pictures the patient and family.” Written Words about individualized Electronic Communication rd Other: ____________________ -3 Year Medical Student our patients with ASD. -
100 Day Kit for Newly Diagnosed Families of School Age Children
100 Day Kit for Newly Diagnosed Families of School Age Children FAMILY SERVICES DECEMBER 2014 100 DAY KIT FOR SCHOOL AGE CHILDREN The Autism Speaks 100 Day Kit is a tool designed to help assist families of children recently diagnosed with autism during the critical period following an autism diagnosis. The 100 Day Kit for School Age Children was released in 2014 and adapted from the 2010 Asperger Syndrome/High-Functioning Autism Tool Kit after the DSM-5 was published. The kits were created by the Autism Speaks Family Services staff in conjunction with both an advisory committee and the Family Services Committee. Autism Speaks would like to extend special thanks to the Advisory Committee for the time and effort that they put into reviewing this kit: 100 Day Kit for School Age Children Mel Karmazin* Advisory Committee Grandparent Ann Brendel Brian Kelly * ** Parent Geraldine Dawson, Ph.D. Professor, Department of Psychiatry and Artie Kempner* Behavioral Sciences Parent Duke University Medical Center Gary S. Mayerson* Lauren Elder, Ph.D. Founding Attorney, Mayerson & Associates Director, Ascent Psychological Services Kevin Murray* Peter F. Gerhardt, Ed.D. Parent Former President, Organization for Autism Research (OAR) Linda Meyer, Ed.D. Kerry Magro, M.A. Executive Director, Autism New Jersey Autism Speaks Social Media Coordinator, Danny Openden, Ph.D., B.C.B.A.-D. Self-advocate President and CEO, Southwest Autism Research and Valerie Paradiz, Ph.D. Resource Center (SARRC) Director, Valerie Paradiz, LLC Valerie Paradiz, Ph.D. Director Autistic Global Initiative Director, Valerie Paradiz, LLC Parent and self-advocate Director Autistic Global Initiative Patricia R. -
Autism Speaks U: Constitution
Autism Speaks U: Constitution Preamble: We, the students of the Autism Speaks U University of Michigan Chapter, in order to increase Autism awareness on campus, to improve the relationships between the local Autism community and University of Michigan, and to advance Autism research and support through fundraising, do hereby adopt this Constitution establishing the rules for our chapter of Autism Speaks U at University of Michigan. Article I: Name The name of the organization will be Autism Speaks U, University of Michigan Chapter Article II: Affiliation with other groups National Organization: Autism Speaks Article III: Purpose, vision, mission, aims, functions of the organization. Section 1. Purpose: Autism Speaks U is a national non-profit organization dedicated to promoting solutions across the spectrum and throughout the lifespan. Autism Speaks University of Michigan Chapter is one of the many chapters located on campuses throughout the country. Our individual goal is to raise money and awareness on campus, through fundraising and programs with local centers. Section 2. Mission: Our mission is to open dialog about Autism Spectrum disorder on campus, through creating a safe- community, promoting awareness and acceptance, as well as fundraising for a cause. Section 3. Autism Speaks U University of Michigan Chapter understands and is committed to fulfilling its responsibilities of abiding by the University of Michigan policies and procedures. Article IV: Membership Section 1. Active membership shall include: Members must be officially affiliated with the University of Michigan. Dues include 10 dollars at the beginning of each semester (or upon joining). Members must attend 75% of meetings and 100% of events (unless reasonable excuse is provided). -
Autistic Adult and Non-Autistic Parent Advocates: Bridging the Divide
AUTHORS' VERSION Rottier, H. & Gernsbacher, M. A. (2020). Autistic adult and non-autistic parent advocates: Bridging the divide. In. A. C. Carey, J. M., Ostrove, & T. Fannon (Eds.) Disability alliances and allies (Research in social science and disability, Vol. 12, pp. 155-166). Emerald Publishing Limited. https://doi.org/10.1108/S1479-354720200000012011 Chapter 7 AUTISTIC ADULT AND NON-AUTISTIC PARENT ADVOCATES: BRIDGING THE DIVIDE Helen Rottier and Morton Ann Gernsbacher ABSTRACT Purpose: Due to the developmental nature of autism, which is often diagnosed in preschool or elementary school-aged children, non-autistic parents of autistic children typically play a prominent role in autism advocacy. How- ever, as autistic children become adults and adult diagnoses of autism continue to rise, autistic adults have played a more prominent role in advo- cacy. The purpose of this chapter is to explore the histories of adult and non-autistic parent advocacy in the United States and to examine the points of divergence and convergence. Approach: Because of their different perspectives and experiences, advocacy by autistic adults and non-autistic parents can have distinctive goals and conflicting priorities. Therefore, the approach we take in the current chapter is a collaboration between an autistic adult and a non-autistic parent, both of whom are research scholars. Findings: The authors explore the divergence of goals and discourse between autistic self-advocates and non-autistic parent advocates and offer three principles for building future -
Autism Organizations Updated 9-21-17
Autism Speaks (US) https://www.autismspeaks.org/ Sponsors autism research and conducts awareness and outreach activities aimed at families, governments, and the public Autism Speaks Canada http://www.autismspeaks.ca/ Autism Society https://www.autism-society.org/ Provides advocacy, education, information and referral, support, and community at national, state and local levels. Autism Science Foundation http://autismsciencefoundation.org/ Mission is to support autism research by providing funding and other assistance to scientists and organizations conducting, facilitating, publicizing and disseminating autism research. Autistic Self Advocacy http://autisticadvocacy.org/ Seeks to advance the Network principles of the disability rights movement with regard to autism. Run by and for autistic people. Autism Research Institute https://www.autism.com/ Mission is to improve the health and well- being of people on the autism spectrum through research and the education of professionals, those who are affected, and their families. Autism Cares Foundation http://autismcaresfoundation.org/ Guiding vision is to enrich the lives of those with autism. Global Autism Project www.globalautismproject.org/ Trains teachers to work with children with autism globally. National Autism Association http://nationalautismassociation.org The leading resource on autism-related wandering prevention and response. Temple Grandin’s Resources http://www.templegrandin.com/ Autistic teacher, animal trainer, author, holds Ph.D Asperger/Autism Network http://www.aane.org/ providing information, education, community, support, and advocacy Asperger 101 https://aspergers101.com/ provide optimum support and expanding opportunities for lifelong growth and fulfillment Spectrum News https://spectrumnews.org/ News and expert opinion on autism research. Autism Citizen https://autismcitizen.org/ Create acceptance of autism through education, public speaking, conferences, etc. -
Download a PDF of the Conference Brochure
8TH ANNUAL CONFE RENCE th nd JANUARY 20 - JANUARY 22 , 2016 KEYNOTE SPEAKER: Temple Grandin, Ph.D Temple Grandin, Ph.D., is the most accomplished and well-known adult with autism in the world. Dr. Grandin didn't talk until she was three and a half years old, communicating her frustration instead by screaming, peeping, and humming. In 1950, she was diagnosed with autism and her parents were told she should be institutionalized. She tells her story of "groping her way from the far side of darkness" in her book Emergence: Labelled Autistic, a book which stunned the world because, until its publication, most professionals and parents assumed that an autism diagnosis was virtually a death sentence to achievement or productivity in life. Dr. Grandin presently works as a Professor of Animal Science at Colorado State University. She also speaks around the world on both autism and cattle handling. Dr. Grandin's current bestselling book on autism is The Way I See It: A Personal Look at Autism and Asperger's. She also authored Unwritten Rules of Social Relationships, Animals Make us Human, Animals in Translation, Thinking in Pictures, Emergence: Labelled Autistic and produced several DVDs. Her fascinating life, with all its challenges and successes has been brought to the screen; HBO has produced the full-length film Temple Grandin. The movie won 7 Awards at the 62nd Emmy Awards on Sunday August 29, 2010. Temple Grandin's work continues to inspire millions, and she has recently been named by Time Magazine as one of the 100 most influential people in the world! Keynote SPEAKER: Barry Prizant, Ph.D Dr. -
Autism Speaks Does Not Provide Medical Or Legal Advice Or Services
100 Day Kit A tool kit to assist families in getting the critical information they need in the first 100 days after an autism diagnosis. Autism Speaks does not provide medical or legal advice or services. Rather, Autism Speaks provides general information about autism as a service to the community. The information provided in this kit is not a recommendation, referral or endorsement of any resource, therapeutic method, or service provider and does not replace the advice of medical, legal or educational professionals. This kit is not intended as a tool for verifying the credentials, qualifications, or abilities of any organization, product or professional. Autism Speaks has not validated and is not responsible for any information or services provided by third parties. You are urged to use independent judgment and request references when considering any resource associated with the provision of services related to autism ©2013 Autism Speaks Inc. Autism Speaks and Autism Speaks It’s Time To Listen & Design are trademarks owned by Autism Speaks Inc. All rights reserved. About this Kit Autism Speaks would like to extend special thanks to the Parent Advisory Committee for the time and effort that they put into reviewing the 100 Day Kit. 100 Day Kit Parent Advisory Committee Stacy Crowe Rodney Goodman Beth Hawes Deborah Hilibrand Dawn Itzkowitz Stacy Karger Marjorie Madfis Donna Ross- Jones Judith Ursitti Marcy Wenning Family Services Committee Members Dan Aronson Parent Liz Bell Parent Sallie Bernard Parent, Executive Director, SafeMinds Farah Chapes Chief Administrative Officer, The Marcus Autism Center Peter F. Gerhardt, Ed.D Director, Upper School, The McCarton School Founding Chair of the Scientific Council, Organization for Autism Research Lorrie Henderson Ph.D., LCSW, MBA Brian Kelly * ** Parent ©2013 Autism Speaks Inc. -
Autism Planning and Design Guidelines 1.0
AUTISM PLANNING AND DESIGN GUIDELINES 1.0 Attempt 1.0 August 2017 - December 2018 THE OHIO STATE UNIVERSITY CITY AND REGIONAL PLANNING STUDENTS AUTISM PLANNING AND DESIGN GUIDELINES 1.0 KNOWLTON SCHOOL OF ARCHITECTURE CITY AND REGIONAL PLANNING PROGRAM Supported By: THE OHIO STATE UNIVERSITY KNOWLTON SCHOOL OF ARCHITECTURE AUTISM LIVING ATTEMPT 1.0 AUGUST 2017 - DECEMBER 2018 i. SUMMARY AUTISM PLANNING AND DESIGN GUIDELINES 1.0 AUTISM PLANNING AND DESIGN GUIDELINES 1.0 i. summary | 3 THE SIX FEELINGS FRAMEWORK Our research culminated in the creation of a planning and design strategy: The Six Feelings Framework. These six feelings combine to promote feelings of being included. When considering their needs, planning and design implementations in the public realm (in a public space or when using infrastructure) should make adults with autism: 1. Feel connected - because they are easily reached, entered, and/or lead to destinations. 2. Feel free - because they offer relative autonomy and the desired spectrum of independence. 3. Feel clear - because they make sense and do not confuse. 4. Feel private - because they offer boundaries and provides retreat. 5. Feel safe - because they diminish the risk of being injured. 6. Feel calm - because they mitigate physical sensory issues associated with autism. Although these feelings are also desirable for neurotypical people they are especially cru- cial for people with autism. Understanding that it may not seem useful to plan for one group of people, planning through the lens of autism can benefit everyone. The Six Feelings Framework helps planners create spaces and infrastructure that are more usable, comfortable, and beneficial to all constituents (but particularly adults with autism) who feel more connected, free, clear safe, private (when needed), calm, and ultimately, included.