Autism Awareness Advocacy, Awareness & Wariness
Each year since my son’s diagnosis, April has taken on new meaning to me, as have advocacy, awareness, and speaking my truth. I want to preface this story by saying that we love everyone who participates in Autism Awareness in any fashion, whether it be in April or any other day of the year.
I do not mean to shame anyone, or to dampen anyone’s enthusiasm for awareness or celebrating Autism Awareness month. I only want this story to augment awareness by emphasizing the ever-present potential for advocacy. And to encourage everyone to tell your story.
We participated in our first walk for Autism Speaks in September of 2013, and Team Daniel was born. Team Daniel and its accomplishments have far exceeded my imagination. We raised over $1,000 during that first year, and then went on to do a music festival in his name that raised over $50,000. The members of Team Daniel ebb and flow. I have lost people in this journey, and it has left me with great sadness at times, along with an inability to fully relate to others. But the unexpected people who have become part of my team far outnumber the ones I have lost.
My struggles bound me to others in similar situations. They allowed me to relate, and that new empathy opened the door to a fuller life and some of the most loyal friends I’ve ever known. I had someone ask me recently, “Does everyone you know have something wrong with them?”
My answer was, “Yes, most of them.” Because it takes damn special people to walk with you through your storm and stay. It takes people who have survived their own storms.
So now we come to my original topic: Advocacy, Awareness and Wariness. I could try to explain the significant difference between Advocacy and Awareness, but instead I’d like to share a TEDxSpokane talk by my dear friend, Heather Caro, who does a much better job of it. She is one of the remarkable members of Team Daniel who “has something wrong with them”.
Think Beyond Pink
Since that first autism awareness walk, and the beginning of Team Daniel, I have learned that Autism is not a hurdle to overcome and look back on. I have learned that awareness will never be a destination we get
Here is what I’ve learned about Awareness from Heather:
Question Everything – This wisdom does not only apply to the donation of money. (However, Heather is correct about making sure you know what you’re supporting, and where your money is going.) It can also apply to messages and posts. Awareness is not a single day in our house or even a month. It’s not a well-meant Facebook post, soon forgotten; it is a constant.
When you make an autism awareness post, please consider the sincerity behind it; who does it benefit and who might it hurt? Also, are you willing to take action beyond the post? The next time you see a mother struggling with her “naughty” kid at the store, will you offer
Dig Deep – You may not have a cause yet, or your cause may have found you. Autism found me. Although it is not a cause I might have wanted, I still get to choose which parts of the cause I support; which types of awareness I want to encourage.
I support autism awareness stemming from inclusion and meeting people where they are at, instead of trying to bring them to where you think they should be. I support awareness that celebrates milestones, wherever and whenever they happen. I support awareness that acknowledges that this cause is
Don’t Be Afraid to Tell Your Story – I started reading Heather’s blog in 2013, right after my son’s diagnosis. I had so many emotions inside of me, some of them angry and hurtful, and I discovered that people reacted badly to these. I soon learned that it was easier to hide my emotions than try to defend them. When you are hurting, people instinctually want to make things better. But, sometimes, well-meant platitudes can be the very words that hurt most.
I was so amazed by Heather’s honesty in this arena, it inspired me to want to share my own story. It took me five more years to be brave enough to do so. I was fearful that people would see my honesty as whining or weakness. Afraid of the potential criticism or backlash, and afraid of the well-meant platitudes that would dampen my story. I am still scared each time I submit new writing to my dearest friends, let alone the public, but there is something about writing down the experience and the pain that allows me to let it go. Once written, it becomes a documented part of my history that I can let go, so I end up writing more for myself than anyone else, and that overcomes the fear.
Honesty is scary, but I think the most profound way I can help spread awareness is by sharing my real, true story, with all its difficulties, missteps and failures. By showing the world that, through our struggle, we are still making life great.
So, what can you do during this month of Autism Awareness, besides wear blue? The same thing you can do anytime, to build awareness for any cause – share your stories. There is nothing more comforting than knowing that others are struggling, and that others survive. It may not look pretty to you, but your story might just help validate someone’s emotions at a time when they need it the most.