“Nothing About Us Without Us.” This is such an important statement when it comes to disability advocacy. In my journey as a mom of a child with autism, I have had to change my thinking and my way of speaking about AJ, my child with autism. AJ has been nonverbal in the past but he has used an iPad to communicate along with a picture board, and now is becoming much more verbal. As he grows in being able to tell us what his needs and wants are, I am growing in my understanding that I can advocate for him, but I do not really speak for him. He does speak for himself, in words and in other forms of communication.
There is a great blog I want to share from Ivanova Smith, an intern at the ARC of King County here in Washington State where Danae and I live, who writes these very words: “Nothing About Us Without Us.” She also writes that we need to move away from Autism Awareness to Autism Acceptance. Read her article here.
For parents, when their child is first diagnosed with autism, they are given a packet of resources from the doctor or diagnosing team, full of information about services and parent support. I was never given information about how to connect with adults with autism or others to hear their experiences. I knew autism was a spectrum disorder, but all I knew at that time was my child, and later, other parents of children with autism. As much as we want to advocate for our children, sometimes our voice ends up being advocating for ourselves. We complain about lack of resources, but our complaints can turn towards our children, instead of advocating for them.
Now that I know autistic youth and adults, I realize where I have been speaking for others with autism, instead of listening. In the church, we need to include all people of all abilities. We need to include disabled people not only in worship, but in leadership. We need to be better about including people with autism, especially our pastors, youth leaders, music directors and others.
So I am writing now, but we are reaching out to invite others with autism to share their experiences of church, to build a more inclusive vision of who we ought to be as the body of Christ. I invite you to comment here and introduce yourself, and perhaps you can share your story as well.