A Reflection on Serving Autistic People

There are many diverse groups of people that make up the richness of the Episcopal Church in Minnesota. A lot of efforts have been made so that ECMN is welcoming and inclusive in all facets of who we are.  

In May 2022, I visited Bishop Loya to talk about what we might do to make our parishes more inclusive for Autistic people, including children and adults. We decided to put together a small committee of priests and lay people who could come up with some suggestions for how ECMN could be better informed about Autistic people. Find those resources here. 

I want to give you a little background information about my own journey of self-awareness. In 2011, at the age of 43 years old, I discovered that I am Autistic. During the twenty-four years prior to being identified, I was hired and terminated from over 30 different jobs because of challenges with verbal and nonverbal communication. I struggled with how to create and maintain relationships because I had challenges with social interactions, maintaining boundaries, and executive functioning. 

When I was formally diagnosed/identified 12 years ago, I finally understood why all of those things happened to me. On the other hand, I felt like I was a failure. I spent the first six years with very few social supports. I found myself really struggling with relating to others I worshipped with. At the end of 2017, I made my way to The Autism Society of Minnesota (AuSM). Once I started connecting with other Autistics, I found a sense of community that I had never experienced before. I found that people were no longer telling me that my behavior is inappropriate.  I worked with some great people who saw my gifts of communication and teaching and gave me opportunities to put them to use. In 2018, I attended the classes to receive a Certification for Direct Care Support for People with ASD.  In May of 2019, I became an independent contractor for educational programs at the Autism Society of Minnesota. Since that time, I recognized that I have a passion for Autistic adults.  During the Fall of 2020, I worked with a counselor at the Minnesota Department of Vocational Rehabilitation Services to start Today’s Autistic Moment: A Podcast for Autistic Adults by An Autistic Adult.  Since that time, I have published over 60 episodes with Autistic adults and professionals as my guests to address issues such as eating disorders, chronic pain management, gaslighting, masking, conflict resolution, and justice in employment.  Because a lot of Autistics are not trusting of religious individuals, I use my secular name for the podcast.

Before I continue, I want to explain why I am using identity-first language. I do not consider myself a “person with Autism.” I am Autistic. Autism is not something that is separate from who I am. I cannot just take Autism off like a jacket I wear outside, hang it up, and put it back on the day after just to make others uncomfortable. I cannot and do not wish to be fixed or cured. I do not have Autism. "Autism Spectrum Disorder" is a medicalized definition used by the Diagnostic Statistical Manual V (DSM-5) 2013.  There is no “Autism epidemic.”  Autism is not a disease or sickness.  I do not see myself as having a disorder that defines me by ableist standards.  I am no more or less a “person with Autism” than I am a “man with same-sex attraction disorder.” Autism is not something that "happens” to us. Autism is not caused by immunizations or because their mothers took acetaminophen. Children do not grow out of having Autism, they grow into Autistic adults. It is innate and biological. Being Autistic means that the brain works differently and so does the Autistic individual.

There are many other words or terms that are used for Autistic people.  "Asperger’s Syndrome" was discovered by Hans Asperger who was an Austrian psychiatrist that lived between 1906 and 1980. Asperger’s work helped develop the words “high functioning” and “low functioning” Autism. During World War II Hans Asperger’s work was used by the Nazis to help determine what boys were to be handed over for execution. This is why I am not using the words Asperger’s Syndrome. In addition, words like “high functioning” and “low functioning” bring a lot of negative meaning. The Autism Spectrum is not linear, it is a diversity of experiences.  

The committee was organized to offer ideas about how the Episcopal Church in Minnesota can approach the subject of Autism and/or Autistics in ways that are more compassionate and understanding. We recognize that there are many understandings and opinions of what Autism is and means. The resource we have put together is to help with the social needs of Autistics and their families, as well as how the parishes can make their liturgies more accessible. Our suggestions include but are not limited to creating safe spaces for Autistics and other Neurodivergents (ADHD, Dyslexia, Dyspraxia etc.) to step away from crowded worship spaces and loud music to regulate themselves by walking around or stimming. We also suggest the use of monitors in those spaces so that they can still watch the worship service. We suggest things like offering noise-cancelling headphones to help reduce noise. Using myself as an example, being in a church with excellent acoustics can also mean that when the congregation claps, the sound is excruciating. Other ideas include finding ways to discover something that Autistics excel at like being a greeter and providing training that fits their learning style so they can participate. 

It is important to be aware of Autistics with sensory processing sensitivities; some things that may affect their sense of smell can include candles, incense, perfumes, colognes, and deodorants.  There are Autistic people like me that want to be verbally asked before extending your hands for a handshake or spreading your arms for a hug. Many Autistics may find the material of albs, chasubles, surpluses, and altar cloths very uncomfortable to touch or wear. I am an Autistic who is highly sensitive to having drops of cold holy water land on my head. In one instance I put the hood of my scapular over my head to help reduce the sensory stimulation, only to have someone say to me, “You are not going to melt.”  I wasn’t worried about melting.  When a sprinkle of cold water lands on my head, I feel the chill for the rest of the day. Before making a routine change in your worship services, be sure you have different ways of explaining what you are doing and give the Autistic some time to make the adjustment. Routine changes for Autistics, including a new rector, can be very complicated. When you talk to an Autistic person, speak very directly and be aware that many of us do not understand or respond to sarcasm or mixed messages. There are many Autistics who do not read or understand body language and/or facial expressions. Many Autistics experience double empathy, which means that we feel things so deeply that our emotions overwhelm us, and we can shut down.

There is one more matter that we want you to be aware of. It is estimated that it is two to three times more likely that LGBTQ people are Autistic. The recent actions of many states to prohibit gender affirming healthcare for transgender youth are also suggesting that they be evaluated for Autism Spectrum Disorder before receiving any treatments. These actions convey the notion that Autistic and Transgender people are incompetent to manage their own healthcare decisions.  While the State of Minnesota has become a safe place for LGBTQ people, those who may be coming here from other states are coming from places where they are not affirmed or warmly received.  

We are making these suggestions because of the importance of our Baptismal Covenant as Episcopalians. Our Baptismal Covenant asks us, “Will you strive for justice and peace among all people, and respect the dignity of every human being?” Our answer, “I will, with God’s help” is a pledge and a reminder that we cannot hope to embrace every person and welcome them into the Beloved Community unless we open our hearts to the Holy Spirit. St. Benedict told us in The Rule to “incline the ear of the heart” so that we can recognize the fruits of the Spirit and apply them to grow as the Church. This resource is only the beginning of paving the way for Neurodivergent Episcopalians find a welcome and safe place for us to be ourselves. We invite you to begin this journey with us.