Session V Course Materials( PDF)

www.autism-insar.org

SESSION 5: Stakeholder Participation at the Systems Level

Geraldine Dawson, John Robison, Dena Gassner July 12, 2018 // 2:00 pm ET

Course Materials The purpose of these materials is to help provide an introduction to the Summer Institute session on stakeholder participation at the systems level. The materials were designed to prepare trainees who are unfamiliar with stakeholder participation with the general background to get the most educational benefit from the session. Toward this objective, we have prepared the following: (1) learning objectives for this session; (2) some key terms and concepts to become familiar with participatory research; and (3) some recommended resources. These materials could be considered “prerequisites” in preparing for this session.

In collaboration with the presenters, these materials were developed by Melissa Maye (Psychology Intern at Children’s Hospital of Philadelphia; [email protected]) and April Choi (doctoral student at Harvard University; [email protected]). Feel free to contact us with questions/comments.

Register for this course and other sessions in this series at https://www.autism- insar.org/events/EventDetails.aspx?alias=SI2018

Learning Objectives The INSAR Summer Institute for Autism Research was established to provide early career researchers (graduate students, postdocs, etc.) with training opportunities in multidisciplinary topics. The Summer Institute team is now working to engage stakeholders as well. Summer Institute priorities are to provide a (1) freely available (2) multidisciplinary training platform for young scientists and others from various backgrounds that (3) allows for international participation. The Summer Institute covers broad topics and is meant for people who are not expert in the topic area. It is offered over a free web platform and allows researchers and stakeholders from around the world to connect with the presenter(s). The overarching goal of the Summer Institute is to expose junior scientists and community members to topics they are not currently engaged in, with the hope that basic scientists, clinical scientists, and the autistic community can learn from each other and advance the understanding of autism.

The current session, Stakeholder Participation at the Systems Level, is led by Geraldine Dawson, John Robison, Dena Gassner, and a team of trainees who worked in tandem to prepare these materials and the web presentation. At the conclusion of this session, participants will: 1. Gain an understanding of the history of stakeholder participation advocating and shaping autism research

Key Terms Autism Centers of Excellence (ACE) Program is a trans-NIH initiative that supports large- scale multidisciplinary studies on ASD, with the goal of determining its causes and potential treatments. ACE institutions are required to submit all data to National Database for Autism Research, which allows for the seamless integration of data, research tools, and research projects from multiple sites and increases the power and efficiency of ACE research. https://www.nichd.nih.gov/research/supported/ace

Autism Genetic Resource Exchange (AGRE) is a non-profit DNA repository housing a database of genotypic and phenotypic information that is available to autism researchers worldwide. http://research.agre.org/program/descr.cfm

Autism Genome Project sought to build a large database of DNA from families affected by autism spectrum disorder. Researchers from around the world collaborated to create a database of over 1,400 families (1,168 contained at least two members with an ASD). https://www.autismspeaks.org/science/initiatives/autism-genome-project/first-findings

Autism Science Foundation (ASF) is an organization that aims to support autism research through funding scientists and organizations that are conducting, facilitating, publicizing, and/or disseminating autism research. ASF also functions as a resource to the public and aims to increase awareness of the needs of individuals and families affected by autism spectrum disorders. https://autismsciencefoundation.org/

Autism Self Advocacy Network (ASAN) vis a nonprofit organization created by autistic individuals to “ensure the meaningful involvement of autistic individuals in making policy at all levels, to promote a culture of inclusion and respect for all, to enforce the rights of autistic people to equal opportunity at school and at work, and to improve funding for community services and supports along with research into how they can best be provided.” http://autisticadvocacy.org

Baby Siblings Research Consortium (BSRC) is an international network supported by Autism Speaks that pools data from individually funded research sites to study the development of infants with an older sibling with ASD. https://www.autismspeaks.org/science/research- initiatives/high-risk-baby-sibs

Children’s Health Act of 2000 refers to a legislation that authorized the Centers of Excellence at the National Institute of Health (NIH) and the Centers for Disease Control (CDC) to promote research on the cause, diagnosis, early detection, prevention, control, and treatment of autism spectrum disorder. https://www.congress.gov/bill/106th-congress/house-bill/4365

Interagency Autism Coordinating Committee (IACC) is a U.S. federal advisory group within the Department of Health and Human Services that helps plan and coordinate autism-related activities. https://iacc.hhs.gov/

Simons Foundation Autism Research Initiative (SFARI) Foundation established by Jim and Marilyn Simons to advance research in autism spectrum disorders. https://www.sfari.org/

Stakeholder - A stakeholder is any person, group, or organization with an interest in autism, or who can affect or be affected by the condition. There are many different types of stakeholders to consider (see PCORI list), including autistic people, their families and teachers, autism researchers, and policy-makers with an interest in autism.

Key People

Peter Bell https://ascendigo.org/2017/03/national-autism-leader-peter-bell-appointed-president- ceo-ascendigo-autism-services/

Samantha Crane http://autisticadvocacy.org/about-asan/staff/

Dena Gassner http://www.denagassner.com

Karen & Eric London https://autismsciencefoundation.org/about-asf/media-center/press-releases/asf-co-founder- karen-london-and-asf-scientific-advisor-dr-eric-london-recieve-insar-advocate-award/

Ari Ne’eman https://en.wikipedia.org/wiki/Ari_Ne%27eman

Alex Plank https://en.wikipedia.org/wiki/Alex_Plank

Scott Michael Robertson https://www.mbs.net/uploaded/News_PDFs/ScottRobertsonBio.pdf

John Elder Robison http://www.johnrobison.com/

John Shestak & Portia Iversen https://portiaiversen.wordpress.com/autism/

Scott Michael Robertson https://www.mbs.net/uploaded/News_PDFs/ScottRobertsonBio.pdf

Stephen Shore https://researchautism.org/who-we-are/stephen-shore/

Alison Singer https://autismsciencefoundation.org/about-asf/board-of-directors/

Jim & Marilyn Simons https://www.stonybrook.edu/commcms/simonseffect/about/aboutsimons.html

Paula Durbin-Westby http://www.thinkingautismguide.com/2012/04/paula-c-durbin-westby-and-autism.html

Bob and Suzanne Wright https://www.autismspeaks.org/about-us/our-founders