My sister, Sand, called me last week to tell me April is Autism Awareness Month, with yesterday, the 2nd, designated Autism Awareness Day. I asked her if she wanted to offer a testimonial. She declined because she is not comfortable speaking in public but she agreed to write about her experience.
Autism seems worthy of a sermon not just because one in 110 children receives a diagnosis somewhere along the autism spectrum, not simply because more and more adults with Asperger’s Syndrome, a milder form of autism, are penning memoirs and in the case of Temple Grandin, multiple books. Autism reframes ordinary experiences non-autistic or neuro-typical folks take for granted. Peering through the lens of autism allows us to glimpse our world from a different angle. That is where the spiritual value of a sermon lies.
Whenever we cling to a singular vision we risk becoming entrenched and entitled. We chance a fundamentalism of our own making if we become purveyors of a singular truth enabled by a singular view. What seems apparent, even inarguably evident from our perspective is often not the case from someone else’s. In Libya, rebels fight to overthrow a despot and his supporters fight to retain a leader who has provided stability. The U.S. military forms part of a NATO coalition to protect Libyan civilians from attacks by weapons the U.S. sold Qaddafi.
We live with and within a multiplicity not a singularity or duality of perspectives; autism provides a useful, less politically charged way of remembering that.
When my sister and I went to lunch last Monday, she handed me four carefully handwritten pages entitled “My World with Autism,” or “Coping through the World of Autism.” Her titles alone are instructive. It is in fact, her world, a world shaped by the autism she experiences markedly different from ours. “Coping through the World of Autism” evokes a series of passageways to be negotiated, rather than a series of experiences to be savored.
I have edited her remarks for concision but otherwise I present to you what she wrote.
Since I suffer from Asperger’s Syndrome which is one of the most common forms of autism, I interpret the world differently. I am not able to understand what people say to me often because I take everything literally, I am not able to understand when people joke or kid around with me, or people’s sense of humor. I cannot interpret facial expression, read body language, or understand nonverbal cues socially or otherwise; therefore I have great difficulty understanding nonverbal communication. I can only process information at a concrete not abstract level so that’s why I take everything literally. I am only able to process verbal, literal communication.
Consider for a moment the nature of my sermons. As you know, I rely on metaphor. Two weeks ago, I quoted from another Unitarian Universalist’s sermon identifying figurative language as the hallmark of our liberal faith. This is why in large measure, my sister will not worship here. It’s not just that she prefers the lively beat of praise music and the repetition her pastor employs in his preaching style: it’s that she worships in a context of literalism. The Bible is understood as the literal word of God. The stories aren’t metaphors meant to be untangled by critical, abstract thinking. They are admonitions and examples to be followed by the devout.
The figurative world we inhabit so rich with subtlety and metaphor is a planet inaccessible to my sister. The faith that gives us room to worship freely locks her out.
Consider the onslaught of nonverbal cues and subliminal advertising we are expected to read along with the nuance of facial expressions, body language and social cues in order to successfully interact and professionally advance. Now imagine being illiterate—unable to decipher any of the signposts in everyday life. Erase being able to read tone of voice, facetiousness, sarcasm, irony, expressions, gestures, even posture.
Suddenly the world becomes a foreboding and forbidding place.
Sand continues:
"I have difficulty in social situations due to not understanding what people say to me and not being able to handle words, or too much auditory and visual information. I have severe sensory issues, a major characteristic of autism; therefore I can’t tolerate too much auditory or visual input and I have severe sensitivity to touching or being touched. With over-stimulation I get overwhelmed, which causes a sensory overload. I get headaches, I get upset and angry very quickly and I can’t put my mind at ease. It can take me anywhere from ten minutes to ten or twelve days to overcome a sensory overload.
Due to my autism, I do not do well with change or surprises. I thrive on structure and routine; when there is a change I get upset and overwhelmed. I am learning to cope with this issue by understanding change is part of life whether it is sudden or not. I thrive on sameness. One important aspect for people with autism is a predictable environment—knowing what to expect and the order in which things will occur.
I am learning by working with children who have autism just how imperative this is. I have great difficulty with the need to have constant reassurance, for example, if I have something scheduled I have a tendency to ask if the appointment is still on or if the plan is still taking place. I do not do well with uncertainty at all."
Many of us don’t but we adapt more readily. We all like to feel assured our lunch date hasn’t forgotten us or the appointment hasn’t been changed but we don’t need to call five times to make sure. Given the rapid pace of change technologically and practically the world becomes a whirlwind of uncertainty. Note the use of obstructionist metaphor there.
Sand continues:
"When I do not have reassurance about what is happening that causes me to become very disorganized and upset. I tend to get angry because I live as though my life is then unsettled. This doesn’t happen out of meanness; it is just the way I respond emotionally. These same emotions arise when there is a change in my routine or a surprise. That really puts my system off base and my response is to automatically get angry and upset. It takes time to recover."
More weeks than not my sister spends at least a day if not two or three recovering in bed. For Sand, it’s not just surprise parties or unannounced visits that unnerve her; any variation, even a suggestion that would save her money or time, if it requires deviating from her route or routine, rattles her. The underpinnings of her world are precarious enough; the slightest shift to them threatens a tectonic eruption no less consequential to her than the actual earthquake was to Japan. In my frustration at her inability to focus outwardly, I try to draw her attention to the crisis in Japan or the unrest across the Middle East, but she can’t go there. She has told me time and again empathy is extremely difficult for people with autism to feel. As she says it is not out of meanness, but limitation imposed by living her life on high alert.
If we consider what it might be like to be bound to literalism, to perceive the world in gradations of threat; if we sit for a moment imagining what it would be like to experience this worship service as a sensory assault: the crescendo of the organ, the barrage of words, unpredictable movements as people rise to make an announcement or light a candle, the sudden return of the children from downstairs, a handshake offered, or worse a hug—if we can conceive that what comforts, inspires, consoles us could unhinge another, we begin to understand the limits of using ourselves and our own preferences as a reference point for anyone else. It’s human of course to do that. To think, I like to have this so I’ll get one for you. I’d love it if my friends drop by so I’ll stop in on my way home. I enjoy worshipping this way so this is the best way to do it.
Just as political choices and military decisions reflect social location, economic advantage or lack thereof, personal history and future interests, the shape of religious community and spiritual practices do, too. As we consider the direction this congregation will take, let us consider what the inclusion we seek would really mean.
A recent newspaper article addressed reasons Sunday morning in church continues, in the words of Martin Luther King, Jr, to be the most segregated hour on earth. Most congregations remain homogeneous. Primarily white or Latino, African-American or Korean, and to some extent divisions remain in some churches around class. In most cases, according to the report, primarily white churches want to be multicultural but the difference in worship and music styles as well as variations in culturally held values accounts for the lack of successful integration. We may want others to experience what we enjoy, but we forget that our pleasure may be their dissatisfaction. For me, there is no better reminder of this than spending time with my sister, Sand.
Any change to worship style will include some and alienate others, but we might think about the additional ministries we could offer that might reach a wider range of people. To be able to plant seeds methodically in rows or walk the familiar pattern of a labyrinth, to create space for quiet contemplation alone or with others throughout the week would foster inclusiveness. As Rumi reminds us, “there are a thousand ways to kneel and kiss the ground.”
Sand’s autism did not get identified until she was twenty-nine which means she spent almost thirty years misdiagnosed and misunderstood. She did not speak or walk until age two. As a crawler when a lot of kids become toddlers, she remained locked into either silence or screaming, often overturning the living room furniture with the force of a tsunami. She cried for hours on end—inconsolable and unreachable in her own unidentified world. The hugs we offered, the steady stream of words, the scent of my mother’s perfume, the lights flipped on, the constant noises, the jerk and whirl of motion rained down on her in torrents we never understood.
Now when my sister repeats herself ad nauseum I cannot help but think, payback is a—well, you know the expression. She writes:
The most major part of my autism is my perseveration, my need to constantly repeat things. I usually would not mean to repeat intentionally but it happens perpetually. This affects me in social situations and in the job world too, along with my other communication problems. The repetition is an aspect I honestly cannot help very well. I also have great difficulty explaining things, sharing information and conversing with others.
I do well with children now as an adult in terms of them understanding me. Adults often do not understand me and that leads to me feeling frustrated and agitated at times. On a positive note, I have been blessed to find a wonderful speech therapist who specializes in autism who helps me to communicate better, share information with others, develop conversational skills and enhance interactions. I take medications for my Asperger’s but I must be honest; it only helps some. It is my speech therapist, my occupational therapist and my dedicated supervising teacher at the school where I volunteer with children on the autism spectrum who are trying to make a difference for me.
I interpret the world differently and cope with everyday life situations differently due to my autism. I am thankful for the help I receive professionally and through my volunteer experiences.
One of the most poignant illustrations of how Sand interprets the world occurred last year when we went to an Expo on Autism at Antioch College in Keene. We attended a presentation by a woman with Asperger’s Syndrome who enumerated the symptoms Sand named. The physical pain of too much sensory stimulation, how viewing rapid-fire images literally hurts her eyes. How sudden noise disables her. How unpredictable motion unsettles her and can activate panic. What was fascinating is that as she spoke, she showed a rapid-fire barrage of powerpoint slides. Her service dog barked erratically and the woman flapped her hands and jerked her body. Within moments Sand leaned over and said, “This speaker is terrible.” I assured Sand I found her interesting so we stayed. I completely missed the cue that Sand was actually asking to go. It was horribly overstimulating for her.
That’s when I realized that for Sand, being with another person with autism is not necessarily helpful much less comforting. Sand’s world occurs at the same time but not on the same plane; the terrain is always rocky, the ground constantly shifts underfoot and the dark clouds we recognize as brimming with precipitation lurk over her head about to dump rain unannounced.
To greater and lesser degrees we all cope with uncertainty. Autistic or not, we attempt to control our environment to the best of our ability. We order our little corner of the universe by establishing routine and recognizing pattern. We habituate ourselves with morning coffee, the same route to work, the good-night phone call or kiss. We willingly inhabit consistency as if it were certainty. We do this to function without succumbing to panic or debilitating fear. As Secretary of Energy Steven Chu said recently on NPR, of course no one can guarantee a nuclear power plant will never have an accident or a plane will never crash. We assure ourselves with positive safety records. Otherwise we would never get in a car, or for that matter, take a breath.
The acuity with which my sister clings to routine reminds me we all need reassurance. We recalibrate by checking in with ourselves and each other. Here it is the very expressions of presence and care we offer one another during worship and social hour that help us feel connected. Religion, from religare, is about what re-fastens us. None of us wishes to drift isolated and alone. We want to feel tethered to the tree of life. Not constricted but lovingly held.
Being Sand’s sister is sometimes a deeply frustrating experience. I find myself far less patient than I wish to be. I get exasperated with her easily because I want to live in a world sculpted by empathy so when I bump into Sand’s inability to express it, ironically I lose my capacity to empathize with her. I have to remind myself Sand doesn’t choose to focus on herself because she values self-centeredness as a spiritual goal. She focuses on herself the way any creature experiencing an assault on the senses turns inward to self-protect, to survive.
The world of poetry, pathos, and unexpected delights many of us joyfully inhabit is part of a multiverse not a singular universe. There are not just other perspectives on this world, but other worlds co-existent with ours—rich with lessons in a language not our own. Amen.
