Advocating for autism comes in many forms and practices. Be it medical, educational, vocational or societal to name a few. For those of us on the front lines, our words are often the most effective method of defense. We can share our experiences and knowledge with those who are unfamiliar with the needs and abilities of our loved ones with autism. While I have used my voice and my words, both written and spoken on countless occasions, it never occurred to me there was another way. It was one Jonathan showed me years ago: advocating without words.
Four years after our move to Madison, we were settled into Jonathan’s program and supports through the Autism Waiver. That is, until a new governor took office and decided the waiver was too expensive and not cost effective for those in need. As a parent, this was (and is) our worst nightmare and a constant battle― advocating for the necessary supports.To an outsider or onlooker, it’s a dollar amount. But for anyone with a neurodivergent child, it is a lifeline to a better future and improved quality of life.
The Autism Society of Wisconsin and all of its subsidiaries, Madison included, went to work. Contacting the governor’s office, as well as the senators and congressmen who would be voting in our districts statewide became our first task. This was followed by countless parent meetings to gather our resources and defend against this attack on our children. “Attack” may sound harsh, but advocacy of this magnitude requires brute strength and relentless pursuit in support of our children’s needs.
Madison, being the capital of Wisconsin, became ground zero, and our next step was to make our presence known at a rally. I must say that both the congressman and senator from my district were staunch defenders of the fight. So much so that when I contacted them, I was directed to whom I should speak with when I attended the rally― my opposition, who only viewed the waiver as dollars and cents, removing caring and common sense from the agenda. Little did they know, I had my own agenda, as did the thousands of parents and their children who attended the rally. What I never expected was that Jonathan also had one of his own.
I will never forget that day. We flooded the capital with our children, our signs, our chants, facts and figures, and most of all, our fierce love. I remember being told by my senator that never before had he seen such a small group make such a huge presence and impression. As we all set to work looking for those in opposition, Jonathan and I went in search of the man I was told to connect with regarding our story. Ironically, I found him alone in his office, so Jonathan and I made our entrance.
He immediately looked up with a look of disinterest and annoyance. He informed me that he had already spoken to other parents and nothing I had to say was something he hadn’t already heard. His condescension prompted me to fire back with an onslaught full of facts, figures, our personal story, and what would happen in the long run to children and their families without the waiver. Jonathan was by my side, listening and staring at the man as he began his rejection of my views and opinions.
I guess Jonathan didn’t like what he was hearing anymore than I did, so he began vocalizing. At that point I stopped talking and let Jonathan take over. As if right on cue, he ramped up his expression of displeasure, the congressman becoming visibly more and more uncomfortable. I smiled and let him continue as his vocalizing echoed out into the halls. Jonathan was making inroads where I hadn’t, until the congressman became so stressed he finally exclaimed: “Aren’t you going to make him stop?”. To which I replied: “You’re the one taking away his funding, you make him stop!”.
He proceeded to throw his hands up in a gesture of exasperated surrender and pledged his allegiance to the waiver. Jonathan stopped and smiled at me. I thanked him for his time and also reminded him that if he had a change of heart and voted against the waiver, we would be back. Not just Jonathan and myself, but the army outside. He assured me we had his support, and true to his word, we did.
The autism waiver remained unscathed due to the strong advocates of family, friends, therapists, teachers etc., who refused to let others negate our children’s needs and supports. We used our time, voices, words, presence and other resources in defense of our children. Time and time again will continue to do nothing less.
But the strongest advocate was Jonathan, who without saying a word, achieved success with his own voice.