As parents of children with special needs, we are often put in the position where we have to advocate in order to get our children’s needs met. This is a regular part of parenting. “Normal” parents do it, too, though they usually do so under different circumstances and without such a loaded verb to describe their efforts.
When you put yourself forward as an advocate, you are doing something different. You’re not simply advocating for your child(ren) or even children like yours. You are advocating for an entire population of people that ranges from the unborn to adults. What you say and do as an advocate impacts the lives of people you don’t know and may never meet.
It’s a weighty responsibility. One of my biggest concerns as a parent is that there are people who “advocate about autism,” and yet they do not value the lives of my children. One of my biggest concerns as an advocate is that I cannot adequately speak for people I don’t know.
There are parents in this world who are so overwhelmed by their child’s autism that they say and do things that jeopardizes the lives of their children and the lives of everyone else with autism. There are people in this world who are so motivated by profit that they take advantage of desperate and/or gullible parents and caregivers, and jeopardize the lives of everyone with autism in the process.
On the other hand, there are parents and people with autism who are so convinced of their own authority due to their experiences that they speak as if their experiences are autism. They tell their story as if their story is the story of autism. In the process, they marginalize everyone else who experiences autism for themselves.
It’s important for those of us who speak (or write) publicly to recognize when we are crossing the line between speaking as a parent (or a person with autism) and speaking as an advocate. It’s important for us to act with integrity and respect all the people involved, who may have very different experiences and needs than we do. And it’s important to recognize that when we fail to do so, intentionally or unintentionally, we will face opposition, and that we should face opposition.
Whether I am acting as a parent or an advocate, I don’t “own” autism. You don’t either. Nobody does. Nobody can. Autism isn’t “ownable.” Nobody can have exclusive rights to autism. Nor can anybody have exclusive authority over autism. Autism is a word that sums up a set of experiences. Those experiences vary, sometimes to a great degree, from individual to individual and from family to family. When we forget that, we begin to erase others. But there are those of us who refuse to be erased.