Living with Autism continued
Some people use the term “Family Life Cycle” to describe the familiar themes in family life that we encounter if we have children. Life cycle events may be happy, such as the birth of a much wanted child, or sad as in the death of a grandparent, but they are all normative events that most people encounter. Parents anticipate and expect milestones such as the first day of kindergarten, getting a driver’s license, or going off to college. For the family affected by autism, these events may not occur, and when they do not, their family member’s differences are highlighted all over again. Thus every life cycle event is fraught with potential challenges for the parent of a child on the autism spectrum and every point of the spectrum has its own demands. The characteristics of autism begin in early childhood and often persist into adulthood, making life very difficult for the family. They can also make inclusion in the worship practices of one’s faith community quite a challenge. However, the benefits of support for the family and the person with autism demand that a religious leader and congregation make this effort. Having a child with this degree of disability may heighten the need for families to understand their struggles within a religious context. One aspect of their sadness is that parents may recognize that their child might never participate in some of the major ritual blessings of adulthood, especially marriage and the practices surrounding the birth of a child. In spite of the loss of these anticipated moments of joy, parents, grandparents and siblings can take great pride in being present when their loved family member participates in some of the childhood religious rituals that are major developmental markers. A goal for many is to facilitate their participation to the extent that they can engage in age-appropriate rituals such as a First Holy Communion, Confirmation or Bar/Bat Mitzvah. Achieving this goal requires creativity and know-how on the part of teachers, religious leaders, and other members of the congregation. I have seen this done in ways that were deeply moving for all who were present. We need to do all we can to enable the person on the autism spectrum to be welcomed and participating members in our religious communities. For everyone, the most important benefit is having a lifelong community and place to belong. While we cannot know the extent to which a person will experience the sacred nature of the encounter, we do know that for those who love the individual with autism, this participation can be profoundly moving. We also know that the encounter with a spiritual dimension in one’s life is experienced by each of us in our own way. It is not our task to judge the quality of any other person’s experience, but rather to point in the direction of our faith community and allow the sacred relationship to evolve.
He has autism, so he knocks things off a table at Roman Gourmet one day, thinking that I didn’t understand what he wanted. He doesn’t even realize every startled person in the restaurant is looking at him-- even if they are trying not to. Living with it, I am painfully aware of the looks and the whispers in the restaurant as I determine a compromise that won’t inadvertently reward his behavior, but still prevent further disruption as I get him out of the place as quickly as possible. He has autism, so the next day at the same restaurant he’s too intent on his pizza to notice tears in my eyes when I apologize for the previous incident and the response is, “Don’t worry. We love him. He’s been coming here since he was this big,” motioning somewhere around knee level. He has autism, so it doesn’t occur to him that the people waiting with us in the long post office line may not be as entertained as he is by his unique way of “singing” to fill time. Living with it, I remember a man on the train yelling at me, “Can’t you keep him quiet?” I am prepared for the worst when the woman in front of me at the post office turns around, but she smiles and asks if it’s the echo in the room that he likes. The woman behind assures me, “it’s okay,” when he leans a little too close to look at her. I am prepared for a long, anxious wait in line but then both of these strangers offer to hold my place so I can attend to his needs. Situations like these arise every day. Although you might not know what it is when you see it, you probably live with continues on next page
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Autism and Faith
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