Has autism spectrum disorder touched your life? Given the current statistics from the CDC, (1 in 59) it is quite possible your child, relative, neighbor, or you yourself have connections to this disorder. If autism is personal, action must follow. Changing the world, including its level of awareness, understanding, and inclusion, takes thoughtful and unified steps. And passion. Though I am far from a professional advocate, I have learned much from my year as an Autism Speaks Volunteer Advocacy Ambassador. Here are my tips for becoming an effective autism advocate.
Tips for Becoming an Effective Autism Advocate
Tell Your Story
Every face and voice of autism is an equal part of the puzzle. The to whom, what, where, and when can be the challenging part. Step back from your journey and be insightful; what is the essence of your experience? Can you relay your passion in a thoughtful but condensed manner? For me, that process of “boiling down” years of ups and downs, challenges and triumphs, took some time. I thought. I wrote. And then I edited. Those steps naturally brought me to the “closing argument.” What are the chief hurdles facing our community’s success?
Additionally, the Autism Speaks Official Site will offer a gamut of resources regarding the latest research and programs available to the autism community. These include science, research, healthcare, insurance, housing, education, employment, and support services. Also, the all-important autism advocacy policies that impact every individual with autism, such as Autism Cares and the Money Follows the Person Program, are constantly updated. The easy-to-understand explanation of each bill and/or initiative are a Godsend to our families. And us!
Become a regular at local events held by policy makers. Congressional Town Halls, school board open sessions, and other special community gatherings are worthy of your time. Get your name and email address on your Congressperson’s/Senator’s/Assemblyperson’s listserv to be apprised of upcoming events.
Person-to-person, eye-to-eye, heart-to-heart. If it takes a village to raise a child, it takes a country to support an individual with autism. Develop a relationship with the staff in the local and/or DC offices of your elected officials. Just as you have a story, so they do too. Stop by just to introduce yourself. Stop by to say hello. If you bake, bring cookies. If you craft, make something they can display on their desks. Seek them out at town halls, and shake their hand. Send holiday cards that include a photo of you and your family. Eventually those connections will parlay into a real relationship.
Schedule a Meeting
If you have a special concern that you feel might be addressed by one of your local officials, schedule a sit down. Either call the specific office, or find the proper email address on their websites. This process might take some perseverance, so don’t be dissuaded by radio silence! These staffs are quite busy and manage a multitude of requests daily. Prior to your meeting, outline your thoughts. Your time is precious, and so is theirs. BUT, be real and not overly-scripted either. Be sure to send an email thank you as a follow up, but my personal favorite is a handwritten note. In our age of digital bombardment, these cards stand out. At every opportunity, include a photo of you and your person with autism. (Or bring them to your meeting, if possible!) Again, this is personal.
Become an Autism Speaks Volunteer Advocacy Ambassador
If any of this resonates with you, consider applying to become an Autism Speaks Volunteer Advocacy Ambassador. This grass roots group of self-advocates, parents, relatives, and invested professionals support Autism Speaks advocacy by doing all of the above! With monthly presentations, continued staff support, and guidelines for every step of the journey, you can make a difference! And if possible, attend Autism Speaks Hill Day each April.
At present, there are over 200 Ambassadors from 39 states included in the program. If interested, you can email firstname.lastname@example.org for additional details.
As the quote by Dr. Stephen Store goes, “If you’ve met one person with autism, you’ve met one person with autism.” Each story, each piece of the puzzle brings us closer to true understanding. Use these tips for becoming an effective autism advocate and tell it!!