By Lisa Wiederlight, SafeMinds Executive Director and Shelley E. Hendrix, Guest Blogger
The United States has been ducking the autism epidemic, and might continue doing it for another quarter century before we start to see solid answers for those we love with an autism spectrum disorder. By not coming together, taking action, and demanding more significant and measurable outcomes, otherwise known as REAL CHANGE, the autism community has let this happen.
So what? What can you do about it? You are just one person.
Sometimes that is all it takes to change a trajectory.
What happens if just one person develops a strong personal working relationship with their Member of Congress? What if two more people develop that same kind of personal relationship with their United States Senators? What if these individuals work as a team to engage local, state and federal elected officials and jumpstart community mobilization? It doesn’t take that much to do.
535 somebodies. From everywhere. And why bother with building this foundation?
Because relationships elevate you – and your community.
As you read this, take a moment to think about the neighbors on your street. Who do you think of first? Most likely, it is the neighbor with whom you have a relationship whether good or bad. If it is a good, friendly relationship, you regularly visit with and help them. You bring value to each other lives. If the relationship is stressed – because they are annoying, gossiping, demanding, angry neighbors – you might hide when they come up your walkway to ring your doorbell hoping they will just go away.
The first group represents the people you would do anything for – give them your last egg, let them borrow your new lawnmower, take care of their dog while they go on vacation for a week primarily because you know, without a doubt. they would do the same for you – any time, any day. The second group represents the people who bring no value to your family. Because you have no relationship, their needs drop in your priority list. After all, you’re a busy person with competing priorities.
Would it surprise you to know that our elected officials and their staff have similar behavior?
How do you improve the chances that your voice will be heard above the crowd of people who also want to speak to them every day? How do you get your emails opened faster?
You bring value. You don’t always ask for more. You give of your time, talent, and treasure. You help them serve your community better.
The autism community has this amazing ability to become invisible and slip through the cracks – all of its needs and issues unseen as community members “buck up” and try to handle things ourselves.
We just went through this in South Louisiana with devastating floods that leveled the playing fields. Thousands upon thousands of homes were completely destroyed, as people lost everything they own in successive dominoes – their homes, their memories, their possessions, their cars, their jobs, their insurance. Families addressing autism who made it to shelters were only able to tolerate them for a couple of days before they were either asked to leave, or, upon arrival they realized immediately their family would not be able to handle large congregational shelters. They chose to live in their cars or in tool sheds over the complications and safety issues they faced in the shelters.
Over the years, the South Louisiana autism community has built strong relationships with city, state and federal political officials. Our community quickly organized to help one another and ask those in power to help us as well. Some even showed up asking how they could help.
Our answer? Help us learn from these experiences and develop a standard operating procedure so that no other community walks this walk. Help us to implement it at all levels of government. Help us stockpile the items that will make it easier for families who are already stressed to the max ride out the aftermath with weighted blankets, noise cancelling headphones, special diet resources, and priority to be relocated from congregational shelters to hotels. Help us educate emergency personnel on the special needs of these vulnerable populations during rescue and recovery. We learned it can be really difficult to get a person with autism out of floodwaters in their living room via boat or to be boarded onto a noisy helicopter.
Our leaders have all been responsive. They have all followed up with us. They have stayed engaged when we are tired or when our regular daily lives resume and life takes over. We get that call and they say – “Don’t give up! Keep going!”
What would your community look like if your political officials looked at you like their good neighbors?
The United States government has inherently ducked the autism epidemic. However, our community has also ducked the responsibility of developing working partnerships and relationships.
So now, we are goosing you to change this ineffective paradigm. Both the U.S. Government and all of its stakeholders need to do their part to make change occur in our community. And that change is something you can bring. They don’t know what they don’t know, and if you don’t ask, they can’t help. And how do you do it? It’s easy. Almost like dating….
You don’t have to get engaged right away…take it slow. It has to start somewhere, most likely with you. Start by asking to schedule a quick visit to the district or state office if you can’t get to Washington, D.C. It still means a lot. Ask to get a cup of coffee. A light lunch. BUILD the relationship. Don’t smother it. Don’t be needy. Don’t whine. Always be prepared with an idea for a solution to the issue you are discussing. Bring value. Bring education. Stand in the gap for your ASD neighbors who are too stressed out or too tired to go to a coffee.
Bring them cupcakes. Be nice. Thank them for their service to this country. They are used to being told how awful they are – so be different and put your positive behavior reinforcement skills to work! Find the good and praise that. Take the time to build the relationships and watch what happens.
Now that the election is over, go by and say hello to elected leaders, whether they will return to office again or if they will be moving on. Many of the staff members of elected officials who are leaving office will be moving to work for other offices. Thank the elected officials and their staff for their time while they were there, and if they are staying, introduce yourself.
Let us know how it goes by posting on social media using the hashtag #Goosed. And if you do, we’ll send you a SafeMinds rubber duck!! We’ll be looking for your pictures! Periodically, we’re also going to send out specific action items for you to use with your new contacts, called “You’ve Just Been Goosed!” It’s an exciting time filled with opportunity and the chance for change. We hope you’ll join us.
