It is a joy to be working together on this blog with Danae. Danae and I are both members of The Young Clergywomen’s Project which is how we met originally, but her husband Henry and I go way back–more than ten years ago–to a church in Newton, Massachusetts where I was the Associate Minister and Henry was the Minister of Music.
Danae and I have a lot in common, and we’re good friends. We have a few differences, too. She is an Episcopal Priest; I am an American Baptist minister. Her church experience is more liturgical (what some may call “high church”) and my church experience is more free-flowing (what some may call “low church” or “free church”).
We also have different experiences with autism. Danae’s work has been with adults, and of course her marriage to Henry. Danae’s experience is more with high-functioning people on the spectrum. Typically, many adults and youth who are higher-functioning self identify as “autistic.”
My experience has been primarily with children as a mom to my son AJ. AJ has what is often called “classic autism” in that he is delayed with verbal communication (although he is growing leaps and bounds every day) and other basic functions. My husband and I prefer to say “AJ has autism.”
The difference here is language, and for some, this is just semantics. But for us, person-first language is important so that we remember AJ is one child on the autism spectrum. Also, because he is not speaking for himself and we are speaking for him at this time, it is a conscious choice we have made to say he “has autism” rather than he “is autistic.” The Arc, a national organization for persons with disabilities, has a great article on person-first language.
Nonetheless, as deaf and blind communities have reminded us, you cannot separate out your identity. You are who you are. And youth and adults are reminding us that their identity is important to them. Calling themselves “autistic” is empowering, and sometimes our attempts to lift up the person first have failed to lift up the most important part of their identity, how they perceive and function in our world.
So on this blog, we will use both terms. Neither use is meant to be offensive or demeaning at all, but rather to empower others who identify using the term “autistic” or those who prefer to say “I have autism.” As my son grows, I imagine we will continue to have this conversation and speak about him the way he prefers, which of course is to always begin with his name. He is AJ. He is just one person on the autism spectrum, but he is the one I know best.
And of course, we are going to invite individuals to write for our blog as well and speak about their experiences in the church, what is helpful for them and what we need to do as a church to be more inclusive of all of God’s children.