The spectrum of inclusion

For Ramon Selove, a Unitarian Universalist and biology professor in Stephens City, Virginia, a diagnosis of autism came at midlife, when he was a husband, father, and busy professional. Rather than viewing his autism as a disability, Selove describes it as a difference, with both challenging and compensatory aspects. “I like the way I am,” he says, “and while I know that there would be advantages in being typical, for me, they wouldn’t be worth the things that I would have to give up.”

As UU communities strive to become more inclusive, many are recognizing the need to fully include those with Autism Spectrum Disorder (ASD) and other forms of neurodiversity. Steve Silberman, author of Neurotribes: The Legacy of Autism and the Future of Neurodiversity, defines neurodiversity as “the notion that conditions like autism, dyslexia, and attention-deficit/hyperactivity disorder (ADHD) should be regarded as naturally occurring cognitive variations with distinctive strengths that have contributed to the evolution of technology and culture rather than mere checklists of deficits and dysfunctions.”

It’s a definition that fits Selove’s perspective and his lived experience of ASD. Many classic traits of autism, he says, such as eidetic memory, intensity of focus, attention to detail, and analytic thinking, which are often seen as oddities or problems, can be viewed as gifts that autistic individuals offer their congregations. He and his wife, Shellie, a psychotherapist who works with individuals with ASD, are connected to the Unitarian Universalist Church of the Shenandoah Valley in Stephens City, where their sons took part in religious education and the couple led the congregation’s first Our Whole Lives class. The Seloves now train other OWL leaders, with a focus on including autistic participants, and Ramon Selove presented on the topic at the 2015 UUA General Assembly.

Ramon Selove also wrote a post for the UUA’s Call and Response blog, “Preventable Suffering: A UU With Autism Confronts ‘Coffee Hour,’” which invites readers to imagine this common activity from his perspective and describes some of the strategies he has used to make church more comfortable. Simple things like seating location “can have a big impact on how much distracting stimulus” one experiences, he says. He also suggests examining certain social behaviors, like eye contact: “We assume that eye contact is the measure of how closely someone’s paying attention,” but an autistic person may look away from the speaker in order to concentrate.

One common misconception about autism, says Shellie Selove, is that people on the spectrum lack empathy. “They actually do care about other people’s experiences [but] they don’t always know what other people are experiencing because they [may not] read social cues or nonverbal language. They are usually very passionate, deeply caring people. They just need clear, direct communication.”

Sally Patton, author of Welcoming Children with Special Needs: A Guide for Faith Communities, says that inclusion is not about “how we integrate someone into our existing system, but how we open up our whole way of thinking about what we do, to make room for someone whose way of being with us is going to be very different.” Between 2002 and 2013, Patton worked as a trainer and consultant helping UU communities build inclusive culture and practices. By attending to the needs and abilities of each individual, Patton says, we can see beyond diagnostic labels and “discover the gifts” they bring to a situation. She points out that adaptations made with one individual or need in mind can have benefits for others as well; for example, many people may benefit from worship and religious education with more imagery, or movement, or from having quiet, calm spaces as a respite from sensory stimulation.

Linda Hill, director of religious education at Mountain Vista UU Congregation in Tucson, Arizona, and an educational consultant and behavioral specialist, agrees: “Just because a child is able to sit still in the traditional 1950s classroom style doesn’t necessarily mean they are taking things in, just that they are able to meet a certain behavioral norm.” Through their consulting practice, Hill and her colleague Starr Austin advise UU communities in the values and practices of “radical inclusion,” which is not about assimilating everyone to standard norms but making room for everyone’s unique needs and gifts. As an example, she describes an eighth grader with ASD in her congregation who likes order and “is very fact oriented.” Having specific roles has helped her to feel included and more at ease, says Hill: “She lights the chalice, she puts out our covenants, she checks off agenda items on the board.” Natural community is one in which we are accepted for who we are, by people who choose to be with us. “Church can be an environment that provides natural community,” she says, “and the respect that comes with that.”

“I think the greatest barrier [to inclusion] is assumptions about what people with disabilities need or want or should have,” says the Rev. Helen McFadyen, coordinator of the Accessibility and Inclusion Ministry (AIM) Program. AIM is a partnership of EqUUal Access and the Unitarian Universalist Association that supports congregations in becoming more inclusive and welcoming to people with disabilities. McFadyen notes that while simple changes, like modifying noise levels in the sanctuary, can make immediate improvements, true inclusion takes sustained commitment and may present “unsettling new experiences that demand some creative responses.” Our efforts “must be grounded in our theology of seeing the inherent worth and beauty and dignity of every being,” she says. “It’s not ‘every being who is like me.’ It’s ‘every being,’ full stop.”

First UU Congregation of Ann Arbor, Michigan, was the first congregation to complete AIM certification, in 2016. Today, the impact of that process is seen and felt at many levels, from structural changes like handrails up to the chancel, noise-canceling headphones, and quiet spaces for sensory breaks, to the structure of the religious education program and the culture of the community itself. The ministry team—including Senior Minister Manish Mishra-Marzetti, Assistant Minister Lindasusan Ulrich, and Assistant Minister for Spiritual Growth and Development Cassandra Hartley—values the commitment to inclusion as religious leaders and as parents of children on the spectrum.

As minister to the congregation’s children, youth, and families, Hartley ensures that teachers have training in inclusive practices and that the intake process gives parents a chance to share their child’s needs and gifts, using questions like, “‘What works well for you at home or in school?’ Rather than [assuming that] your kid is a problem we need to fix.” In their OWL class and high school youth group, inclusive practices have made a powerful difference for participants with ASD and mental health challenges.

For Ulrich, whose son is on the spectrum, inclusion is a matter of theology—and self-preservation: “[Congregations] that have a genuine welcome, or are clearly working on it, have a chance to grow and retain people and invite visitors back,” as opposed to those that remain insular, she says. “Given the demographic challenges [of all] religious bodies in this country, we can’t afford to do the latter.”

As the father of an African American son with ASD, Mishra-Marzetti is moved to be serving a congregation that practices inclusion and appreciates his son for who he is: “a gentle, shy soul” of many gifts. “I have seen other people—kids, even adults—react to my son in ways that embody fear,” he says. “When I see people [in this congregation] breaking down that cultural conditioning, to see his gifts, it means more to me than I even have words to convey.”

Like his father, Ramon, Nathan Selove is autistic. Having grown up at the UU Church of Shenandoah Valley, he says the community made him feel validated and included, and he hopes that more UU communities will encourage autistic individuals to be involved in ways that utilize their talents and honor their differences.

“The most disabling part of autism is the way it is treated by society,” he says. Today he is an activist, teacher, and performer who is completing his master’s degree in communication and has a YouTube show called “Autism actually Speaking.” He believes autistic individuals and “neurotypicals” can gain valuable insights about each other through “mutual accommodation.”

“Just as [autistic individuals] want to be accommodated, it’s important for us to return the favor,” he says. This may mean swapping the Golden Rule approach—“Do unto others as you would have them do unto you”—for direct, respectful inquiry about how others prefer to interact and honest conversation about behaviors and intentions.

“Too often, when it comes to any disability, we’re viewed as a pity story,” he says, “and that’s just not the way a lot of us see ourselves.” Rather than viewing themselves as “unfortunate vessels” that have been afflicted, he says, “We view ourselves as people, and we view our disabilities as a part of our being human.”

Even when disabilities are not visible, “we should assume that everyone is always in the room,” says Linette Lowe, former director of religious exploration at First Unitarian Church of Louisville, Kentucky. To broaden the ways in which all congregants, including those with ASD, could engage with worship themes, Lowe and her colleagues created a quarterly activity called “worship stations” shaped around different learning modalities such as art, storytelling, a traditional presentation, tactile experiences, and even numeric activities.

“Inclusion ministry, like all religious education, is about relationships,” says Lowe, and offers an example from a third- and fourth-grade religious education classroom in which each child was invited to share something that was difficult in their lives. One child said, “I have ADHD” and talked about the challenges it presented. Eventually every child in the room identified someone they knew who had ADD or ADHD, and the conversation expanded to include both the gifts and challenges of these conditions. “You felt the room tilt when that happened,” says Lowe.

No matter how sincere our intentions, says one longtime religious education professional who wished to remain anonymous, the work of inclusion can raise complex logistical and budgetary issues such as what support services the church is ready to provide and how these will be paid for and implemented. Acknowledging challenges and limitations is not failure, she stresses, but part of a process in which we must continue to ask, “What more could we do? How could we do this better? If we couldn’t do it today, can we do it tomorrow?”

Annie Scott, president of the Liberal Religious Educators Association and director of religious education (DRE) at Jefferson Unitarian Church in Golden, Colorado, agrees that inclusion will challenge our assumptions and present tough choices—and it will enable us to create communities in which “our whole selves are welcome.” She suggests that the tools we use to dismantle white supremacy are a useful guide. Paraphrasing DRE and white supremacy teach-in leader Aisha Hauser, Scott says, “When we feel ourselves resisting and feeling defensive, we can choose curiosity.” Scott says remaining curious and engaged as we face new situations and ideas is “a spiritual discipline” that can move us toward change and help us avoid the pitfalls of words unsupported by deeper commitment.

By embracing neurodiversity and radical inclusion, UU communities can begin to appreciate—and celebrate—the full spectrum of human experience. As Ulrich puts it, inclusion is not an addendum to congregational life but a central part of our unfolding faith: “We say revelation isn’t sealed. Well, we’ve got a lot to learn from people who are not neurotypical.”

• For inclusion resources for UU communities, visit tinyurl.com/re-inclusion and equualaccess.org.
• Watch Ramon Selove’s General Assembly workshop “Our Whole Lives and Autism: Building a Better Fit”
• Hear Henry Carpenter, a UU young adult, speak about his experience of ASD (14:45)
• The Autism Self Advocacy Network and the Autistic Women & Non-Binary network also offer information and resources for further learning.