A partner ministry of The General Commission on Religion and Race |
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Spring 2022
Volume 12, No. 2
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TheVOICE
of the
United Methodist
Disability Connection
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Greetings in Christ!
Our understanding of autism has changed immensely in recent years but most of us in our churches have not been able to keep up.
In this issue we introduce updated terminology, congregations that are creating environments that welcome autistic individuals and families with autistic children, and resources that will help create Autism Acceptance (not just Awareness).
One change may have jumped out at you in the last sentence. Most adults diagnosed with autism prefer "identity-first" language and refer to themselves as autistic persons, because autism is a core part of who they are. We've been trained to use "person-first" language (e.g. person who uses a wheelchair), which still is preferred by many with other disabilities.
Another new concept is use of the rainbow infinity symbol (see above) to represent neurodiversity, which includes people on the autism spectrum. See the Glossary article below for more on the language of neurodiversity. The infinity symbol replaces the familiar puzzle piece image which does not adequately represent how most autistic adults view themselves.
We are excited to share these ideas and more at our booth at Assembly 2022 in Orlando later this week. If you are attending stop by #513 for free fidgets and bookmarks, ideas you can take back to your congregation, and to take a sensory break if you need one.
Our display at Assembly introduces our new tagline: Disability is Diversity! You may have noticed that saying on the masthead above. Our brand-new DMC brochure celebrates that disability is part of God's wonderful diversity and reminds readers that disability should be very much a part of Diversity, Equity, and Inclusion (DEI) initiatives. As you take a look at DEI measures within your conferences and congregations, make sure that disability is not overlooked!
Blessings, Deaconess Lynn Swedberg, editor
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A Neurodiversity Glossary
5 things I want you to know about me
Creating Safe Sensory Spaces
Autism Resources
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A Neurodiversity Glossary |
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The term autism was first used over one hundred years ago by a Swiss psychologist to describe severely withdrawn psychiatric patients. Initially thought to be a childhood form of schizophrenia, it was later recognized as a developmental disorder. It is no wonder that autistic adults have developed alternative words that better describe their experience and are not grounded in the medical model.
The neurodiversity paradigm is a new way of thinking that recognizes that every brain processes input differently. Each of us is unique and there is no “normal” way of thinking. Out of this insight has grown the neurodiversity movement which advocates for civil rights and inclusion of people whose brains function atypically. The concept of neurodiversity celebrates the gifts and strengths that differing ways of thinking bring to the world.
People who think and process in a societally approved, typical manner are considered neurotypical (NT). Another word that specifically means non-autistic is allistic.
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Individuals whose brains operate differently are considered neurodivergent (ND). The umbrella term neurodivergence includes dyslexia, ADHD, epilepsy, and mental illness in addition to autism.
Because society pushes for standard behavior, neurodivergent individuals often engage in masking, or hiding behaviors that stand out as different or odd. They suppress stimming, or comforting behaviors which may include flapping one’s arms, humming, repeating phrases, or rocking. These repetitive actions are coping mechanisms that help many autistic people stay calm and organized or express excitement or other needs.
Not being able to act naturally in a world that is overwhelming to one’s sensory and communication differences is exhausting. The desire to be valued without having to pretend to be typical led to the recognition that autism acceptance, not simply awareness, is necessary for autistic individuals to thrive.
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5 things I want you to know about me |
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I am an autistic person, mother of four children, bi-racial, cisgendered, ordained Elder in the UMC. I was raised by my autistic father, a Black man who immigrated to the USA from his home country of Belize. I have other disabilities that I acquired later in life which have required adjusting to losses, to new ways of living, and new ways to self-identify. But I have always been autistic. Autism is something that is an integral part of who I am. As a child, my autism meant I was labelled and treated in pathological and dehumanizing ways, all in the name of educational and therapeutic interventions.
I share five important things about me as an autistic person to help others to be affirming and appreciative of neurodivergent people.
#1) Autism is only one of many other things about me. Autistic people are all as different as all trees are different. Given our different ages, skin color, gender, nationalities, educational backgrounds, and other forms of privilege or lack thereof, our experience of being autistic is also unique.
#2) To be a good listener to verbal and nonverbal communication is essential to appreciate others. Listening for understanding (rather than for the purpose of responding) is a gift for both the listener and the one needing to be heard. Not being listened to is disabling.
#3) My autistic brain is not broken or diseased. I am a person, a disabled person with autistic limitations and autistic strengths. God likes me being me! I do not need applied behavioral modification or prayers for a cure for my autism. The assumption that I would need healing from autism is the result of outdated, inadequate understandings of the brain.
I have unique ways of self-expression, ways of emotionally self-regulating, and ways of coping with stress that are healthy and helpful for me to thrive in a world not made for me. These may seem odd to those who are neurotypical or unfamiliar with neurodivergent people.
#4) I have agency and the right to self-determination and bodily autonomy. By virtue of being human I deserve respect and equal treatment under just laws. When I need help, the responsibility is mine to ask for and get the support I need in ways that are good for me.
#5) We are embodied spiritual pilgrims on a journey of learning and teaching. Humility, an attribute of the Spirit (Galatians 5:22), means to be teachable, to learn. As Yoda in Star Wars(R) said, we must unlearn what we have learned. Learning - to listen, to recognize what we need, what constitutes ableism, and taking steps to unlearn falsehoods - is empowering for everyone.
I am glad you are with me on this journey!
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Contributed by Rev. Melinda Baber, Mountain Sky Conference, member of DMC |
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Creating Safe Sensory Spaces |
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One way some churches live out their commitment to autism acceptance is to create a sensory space. Use of a sensory room, or even a sensory corner, helps to calm and regulate senses and emotions that are on overload from our busy and sensory-stimulating church environments.
The first step is to create awareness of the need so that leadership and members will support the initiative. Disability Awareness Sunday is a good opportunity to share stories along with aspirations for creating a disability-friendly church. Traci Koon of Port Vue UMC in Western Pennsylvania read aloud Facebook posts from parents of autistic children who had been told not to return to other churches. The congregation decided that such families would be loved in their church. This attitude plays out in accepting that some children cannot sit quietly during worship and offering support rather than stares.
Putting together a plan starts with discerning what might help the children and youth already present more readily participate. Shaelyn, a 13-year-old Girl Scout at Royal Oak UMC in Michigan was a key player in developing Peace Park, a brand-new new sensory room. If an occupational therapist (OT) isn’t spearheading the project most congregations ask an OT for ideas about what to include in the plan. OT Sue Hey of Stillwater UMC in the West Ohio conference set up a sensory room as an integral part of the Special Friends disability ministry she started eight years ago and is eager to share her knowledge with other churches.
Funding for the rooms comes from various sources. As part of her Silver Award project Shaelyn also helped raise funds for Peace Park. Stillwater received a $5000 grant, while Friendship UMC in West Ohio posted the items needed and congregational members sponsored specific items.
A sensory space need not be an entire room. For immediate access to the calming space, and for supervision and Safe Sanctuaries purposes, having a sensory corner in each classroom has advantages. Nichea VerVeer Guy of Trinity UMC in Grand Rapids, Michigan set up “soft spaces” in all classrooms from birth to teens. Nichea explained that they have pillows for sitting, see-through tents for safe alone time, and weighted blankets that children can access when they need to recenter. They also provide tactile bags for busy hands (adults and children) that benefit from manipulating materials during worship. Providing such fidget bags that can be taken into any space is an easy entry point into sensory ministry.
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Full sensory rooms provide more than quiet space. Some children need focused movement such as swinging, bouncing, or rolling to help regulate their senses. A ball pit that provides full body tactile input is a popular item, though one that needs regular and careful sanitizing. Sue recommends a large vinyl-covered cylinder that can be used for rolling, balancing, or as a small cave for visual privacy. Traci cautioned that rooms should be sparsely furnished to allow room for children to move around, and to avoid overstimulation.
COVID has affected each of the sensory rooms because all items need to be easily sanitized or washed and because families are not yet returning due to risk of infections in medically vulnerable children. Melissa Ewen of Special Connections at St. James UMC in Tampa (Florida conference) helped redesign a carpeted sensory wall that was impossible to clean. The new tactile wall offers a variety of interactive tactile experiences but can easily be cleaned between uses.
Each program reports that members rally behind their ministry and volunteer their services and support. Families of children with autism build friendships with other families and are able to worship for the first time. Children are excited to find a space where they are loved and can be themselves. Leaders report they see God in offers that come exactly when needed and they are convinced that they are engaged in kingdom-building work!
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Media for increasing autism acceptance in adult classes and groups
Practical guides
Picture books for children
Why Johnny Doesn't Flap - NT is OK by Clay and Gail Morton. published 2015 by Jessica Kingsley Publishers.
Different - A Great Thing to Be by Heather Avis, published 2021 by Penguin Random House.
Going deeper
Autism and the Church: Bible, Theology, and Community by Grant Macaskill, published 2019 by Baylor University Press.
Disability and the Church: A Vision for Diversity and Inclusion by Lamar Hardwick, published 2021 by Intervarsity Press.
MMEND: Methodist Ministry on Eugenics, Neurodiversity, and Disability - Facebook information ministry developed and curated by Will Carey with links to the latest concepts around autism, mental health, trauma-informed ministry and more. Most featured resources are created by people with disabilities. Note: this is not a discussion forum, but a place to explore new ideas that will help make your church a more welcoming place for neurodivergent individuals.
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Specialized ministries
Begun in 2011 by Rev. Ed Saxman, this retreat offers fun and respite for families and their children with autism. A sensory room is one of the many resources utilized.
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We hope you have enjoyed this brief introduction to Autism and the Church 101!
Please share examples of your ministries, let us know what kinds of resources you need, and ask questions. We exist to equip you on your journey as you build faith communities where everyone has a place of belonging. Contact us at the DMC email address.
Disability Ministries Committee of The United Methodist Church
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