Community Ambassador Training

Training Outline What is Autism? Autism Speaks History and Mission Autism Speaks Local Community Review of Family Services Becoming a Community Ambassador

What is Autism? Autism 101 Training Video

Autism Speaks Founded in February 2005 by Bob and Suzanne Wright Grandparents of a child with autism The nation's largest autism science and advocacy organization. At Autism Speaks, our goal is to change the future for all who struggle with autism spectrum disorders WWW.AUTISMSPEAKS.ORG

Our History 2005 - ACRE (Autism Coalition for Research and Education) 2006 - NAAR (National Alliance for Autism Research) 2007 - CAN (Cure Autism Now) In 2006 – AS merged with NAAR In 2007 – AS merged with CAN 11/8/2018

Autism Speaks Mission To change the future for all who struggle with Autism Spectrum Disorder Science Funding global biomedical research into the causes, prevention, treatments, and cure for autism Awareness Raising public awareness about autism and its effects on individuals, families and society Family Services Bringing hope to all who deal with the hardships of this disorder Advocacy Bring together the autism community as one strong voice to urge government and private sector to take action

Autism Speaks Local Community

Milwaukee Community Our goal is to make the mission of Autism Speaks local through our outreach activities, fundraising activities, special events, advocacy efforts and awareness campaigns. Supported by hundreds of volunteers throughout Milwaukee and the Wisconsin, in addition to a 9 Collegiate Organizations, multiple interns and one full-time staff member. Tel: 312-515-1452 Email: milwaukee@autismspeaks.org Midwest Regional Office 2700 S. River Road, Suite 304 Des Plaines, IL 60018 www.autismspeaks.org

Science Autism Speaks has committed more than $195 million into research

Science From our first 240 grants funded, totaling over $36 million, researchers have been able to leverage close to $240 million in additional funding from other resources. This means that for every dollar Autism Speaks invests, researchers are able to leverage an additional seven dollars, making your donation all the more important.

Science Locally, 4 projects representing almost $1 million in investments have been funded in Wisconsin, including work done at: University of Madison - Madison, WI Waisman Center - Madison, WI University of Milwaukee – Milwaukee, WI

Advocacy – Federal Initiatives

Advocacy – State Initiatives Helped pass autism insurance reform legislation in a total of 32 states—including four in this year alone!!

Awareness

Family Services Meeting the Needs of those living with autism across the lifespan Newly Diagnosed/Young Children School-Aged Children Young Adults/Adults

Family Services Newly Diagnosed/Young Children 100 Day Kit Autism Video Glossary Snip-Its Haircutting Guide

Family Services School-Aged Children School Community Tool Kit Asperger/HFA Tool Kit Dental Health Guide Transition Tool Kit

Family Services Young Adults/Adults Autism in the Workplace Defining the Future DVD Advancing Futures for Adults with Autism

Family Services Additional Resources Autism Response Team Resource Guide Resource Library Community Connections Autism Safety Project

100 Day Kit www.autismspeaks.org/community/family_services/100_day_kit.php

100 Day Kit 8,000 kits personalized and distributed; nearly 600 here in IL, just in 2010 Personal follow-up with families 3 months later Email personal invitation to families to participate in local Walk Now for Autism Speaks Spanish version (“Manual de los 100 Días”) launched in September, 2008 “I just want to say a great big thank you for my son's kit. It is absolutely wonderful. It was as if you all looked in my head to see what I needed. I have two with autism and I am just really pleased to know that your group cares. I especially like the lists I could use for phone numbers and appointments. This will leave me feeling less overwhelmed. Thank you so very much from the bottom of my heart.”

Asperger Syndrome Tool Kit www.autismspeaks.org/community/family_services/100_day_kit.php

Asperger Syndrome Tool Kit Launched March 2010 Created in response to feedback from families who received the 100 Day Kit. Assists families in getting the critical information they need in the first 100 days after an Asperger Syndrome or High Functioning Autism diagnosis Contains information and advice collected from trusted and respected experts on Asperger Syndrome/HFA, parents and affected individuals

Transition Tool Kit www.autismspeaks.org/family-services/tool-kits/transition-tool-kit

Transition Tool Kit Available in hard copy by calling the ART or requesting online. 125 pages including information on: Self-Advocacy Why Do We Need A Transition Plan? Community Living Employment and Other Options Post-Secondary Educational Opportunities Housing Legal Matters to Consider Health Internet & Technology Getting Organized Resources

Autism Response Team Specially trained to connect families with information, resources and opportunities Toll Free: 888-AUTISM 2, 224-567-8573 (Spanish) Email : familyservices@autismspeaks.org Call volume 430 calls/month & 600 emails/month 13,400 calls in 2010

Autism Response Team Testimonials from our users: “I've found your ART Coordinators to be helpful and compassionate. I have Asperger’s syndrome, a mild form of autism; I knew all my life I was different; but didn't always know what the heck it was.” “I am new to autism, and I do not have a computer. I appreciate that you offer a 800 number so families can call and talk with a real person. Computers can never replace a person’s voice who understands autism and what you are going through.” “This is the first time an organization has responded to my email.” “My grandson has autism and my daughter and I had many questions. Thank you for your email, and the resources you gave us, especially the information social groups.”

What is a Community Ambassador? Serve as representatives of Autism Speaks within their local communities to raise awareness about Autism Speaks Currently focused on promoting the 100 Day Kit. Visit local doctors offices to: Educate them about Autism Speaks and our services Provide free promotional items for the 100 Day Kit to ensure newly diagnosed families have access when needed

Why the 100 Day Kit? Early intervention is crucial for a successful outcome after initial diagnosis Normally diagnosis is by a physician or professional The 100 Day Kit was created specifically for newly diagnosed families to make the best possible use of the 100 days following their child's diagnosis Contain local resources which help a caregiver navigate through the initial process Families whose children have been diagnosed in the last six months may request a personalized copy by calling 888- AUTISM2 or e-mailing familyservices@autismspeaks.org Each request is tracked. Available in English and Spanish and free of charge

Why the 100 Day Kit? Early intervention is crucial for a successful outcome after initial diagnosis. Normally the first person to tell a parent or caregiver of the diagnosis is a physician or professional. The Autism Speaks 100 Day Kit was created specifically for newly diagnosed families to make the best possible use of the 100 days following their child's diagnosis of autism or AS/HFA. The kits contain local resources which help a caregiver navigate through the initial process. Families whose children have been diagnosed in the last six months may request a personalized copy of the 100 Day Kit or the Asperger Syndrome/High Functioning Autism Tool Kit by calling 888-AUTISM2 or e-mailing. Each request is tracked. The 100 Day Kit is available in both English and Spanish and is free of charge, thanks to the support of our donors.

Supplies Arriving in the Mail Leave-Behind Items for Offices 100 Day Kit Slim Jim packets Brochure Stands Autism Speaks Toolkit Sheets Materials Order Forms Community Ambassador Gear 100 Day Tool Kit Autism Speaks Lapel Pin Visit Log Talking Points

Conducting a Visit Wear your Autism Speaks lapel pin Bring the 100 Day Kit, pack of slim jims, brochure stand, materials order form, family services sheet At the front desk, introduce yourself as an Autism Speaks Community Ambassador - ask to speak to the Head Nurse or Manager. If available, request a few minutes to speak to them about a free resource for their patients Present the 100 Day Kit and discuss why it is useful and how patients can access kits at no cost. Briefly introduce the other free Family Resources Ask them to display slim jims in the brochure stand prominently, and send in the materials order form when more supplies are needed. Thank them and encourage them to contact AS with any questions.

What If … the head nurse or office manager is not available? Ask to schedule an appointment at a better time they say there is not a better time? Ask if they would be willing to display the materials, and if you can leave supplies and information with them they are not at all receptive? That is okay. Some offices have policies not allowing them to display materials, etc. Please stay professional and thank them for their time. Note comments about the visit on your log (if they would not display due to policy etc.) and we will target those offices with a different method.

What If … the phone number doesn’t work? Google the address or office name We are targeting the offices as a whole not a specific doctor

Timeline You have successfully completed the Community Ambassador Training Today you will receive your Community Ambassador Supplies and can expect a refill every 6 weeks After receiving your supplies, read all of the materials and familiarize yourself with material Review your assigned offices and call to set up at meeting time

Timeline Visit offices assigned and complete log Be as detailed as possible. Information is recorded to establish relationships and ensure offices are not visited by multiple ambassadors Office visit logs are due back six weeks after you receive your supplies. Please email a copy directly to the Autism Speaks office

Questions Tel: 312-515-1452 Email: Mallory.Walsh@autismspeaks.org If you have a question or comments that needs to be directed to the Autism Speaks Office please contact: Tel: 312-515-1452 Email: Mallory.Walsh@autismspeaks.org Midwest Regional Office 2700 S. River Road, Suite 304 Des Plaines, IL 60018 Thank you for volunteering to be a Community Ambassador. Together we can make a difference!