Religion, Spirituality & Role of Rituals
Religion & Spirituality
While there is limited research on the spirituality of adults with , it should never be assumed that they lack spirituality or connection to religious belief. Just as the population varies widely in their spiritual beliefs, so does the population with autism. Faith communities such as mosques, temples, and churches all have active autistic members and those members should be asked about their beliefs, religious preferences, and practices when appropriate and included in rituals, services, and ceremonies, including those surrounding death.
Autistic adults with high support needs may have a deep sense of spirituality and/or religious belief. Be open to exploring ways individuals with autism may express their spirituality. Some adults on the spectrum may process and express their spirituality using pictures or symbols rather than words (Isanon, 2001). Remember that some people may be spiritual without adhering to a specific religious tradition; for instance, some autistic adults may find great solace and comfort in nature. It is also possible that an autistic adult would like to be involved in a faith community but has not felt welcome or their social anxiety has made it difficult to participate.
Death and other losses may strengthen a person’s religious faith or spiritual beliefs; the situation may also lead to deep spiritual questions. When a person with autism is grieving, it is important to observe differences in behavior as well as what offers comfort as they adapt to life after the loss. Changes in behavior are examples of communication in themselves and may signal a spiritual struggle or challenge.
Role of Rituals
From the beginning of civilization, humans have recognized the importance of rituals such as funerals and memorials. In our modern world, different faith traditions still have meaningful rituals around death. Clergy, faith leaders, and funeral service professionals have a key role in planning funeral rituals and should always strive to include those with autism.
Many autistic adults feel excluded or are excluded from these events by others, have misgivings about attending, or be unable to physically get to the funeral or memorial service. Additionally, autistic people may have a completely different way of wanting to honor a loved one’s life that is outside conventional rituals. Supportive professionals, such as faith leaders, funeral service employees, and those involved in other forms of care can play an important role in helping a person with autism be included in these rituals as much as they would like to participate.
Rituals can be an important part of the process of grieving and mourning. Here are several ways rituals help the bereaved:
- Psychologically — Rituals after death help to confirm the reality of the death. This function of ritual may be especially important for adults with autism, as funerals can provide tangible proof that the person has died. Funerals and other rituals also provide structured activities at an otherwise disorganized time.
- Socially — Many people find comfort in mourning with others, and death rituals can provide that social support. Rituals bring family and friends together to mourn, share memories, thoughts, and feelings, as well as to celebrate the life of the person who died. Ensuring the involvement of a person or persons who have been close to the autistic person, such as a family member, friend, or support person, can be very helpful, especially if social situations are stressful or overwhelming for the autistic adult. Be sensitive to the fact that some autistic individuals will need time away from large groups or may not want to participate in some social events.
- Spiritually — Religious death rituals can provide opportunities to receive solace and guidance from faith beliefs and link people to important cultural and spiritual traditions. Religious rituals provide a common way for a community to mourn together, even if they are not all the same faith tradition. Because many autistic adults historically may have not felt a sense of community in neurotypical populations, it may be especially important to offer the opportunity for inclusion.
Each family has its own death rituals and practices that draw from cultural traditions, spiritual, religious, or humanistic beliefs as well as social backgrounds. There may be multiple events over the span of several days that precede burial or cremation, such as the period of shiva in the Jewish faith, or a wake observed by many of Catholic faith. In many traditions, other rituals or events occur well after the death, such as an anniversary mass or a dedication of a memorial stone. Providing the autistic person with information and options about participation in these rituals can be an important step in helping them to understand and adjust to the death.
There are many ways to participate in both cultural and religious rituals. Sending sympathy cards or flowers, making a donation in honor of the person, lighting a candle, and saying prayers are all rituals that individuals may want to participate in outside of a formal funeral or other religious ritual.
Whatever the ritual, a person with autism should retain the choice to participate—or not participate—in events at their level of comfort. Given that many traditions include multiple events over many days, an autistic adult may elect to participate in some, all, or none of them. Communicate with the individual and their supportive network, if available, about what will happen at the events and what will be seen, heard, felt, and even smelled. Sharing pictures of the actual places where the ritual will take place may be helpful. Many autistic adults are able to make their own decisions around attendance and participation in rituals. For those who cannot, provide opportunities to make decisions around participation. Everyone needs opportunities to say farewells in their own way and a chance to be supported in their grief through ritual. Feeling included, rather than excluded, is usually how people wish to feel.
Many autistic adults take an active role in planning funerals, memorials, and other rituals, either for their parents or other close loved ones. Funeral directors, clergy and others arranging these rituals should be open and flexible to the needs of the autistic person who is planning the funeral and sensitively address their concerns as they would address the concerns of a planner who is not autistic. Questions should always be welcomed and respected and answered with honest and complete responses. As with interacting with anyone, speak directly to the individual, not to a friend or support person who may be with them. If present, the friend or support person can always reinforce what you have said, or rephrase, as needed, or relay whether the individual needs additional interaction.
Whatever the decision about if and or how they will participate, it may be important to appropriately prepare the person with autism for participation in these rituals. The preparation will need to be tailored to the individual. This might include a calendar or schedule of events. Read the individual case studies below for further insight. Some people find social stories helpful. Click here for three social stories about grief, including one on “Preparing for a Funeral” that you can download to read, print, or share.
Situations may arise where the family has made decisions about excluding or including the adult with autism, even if supportive professionals disagree or think it will not be beneficial in helping the autistic adult cope with grief. Remembering that every person grieves in their own way and they may have different expectations for or needs from a particular ritual, it might be helpful to offer multiple opportunities for memorialization or ritual that allow for individual needs and situations.
When Attending is Not an Option
There may be times when attending formal rituals is not possible for an autistic adult. There may be transportation issues that limit physical attendance, or they may be deliberately barred or discouraged from attending a funeral or other event. While these cases are not ideal and could be upsetting, there may be other options for alternative rituals or memorialization to support the person in their grief. Think creatively and include the autistic adult in deciding what might be a meaningful way for them to remember and honor the person who died. Some options for memorialization could be the opportunity to create a memory book or photo album, or a task-based activity such as planting a garden in honor of the deceased.
While self-determination and inclusion are strongly valued, there may be some situations where the person with autism may be too upset or uncomfortable in a particular setting to benefit from the experience and may decide not to attend. In situations where including the autistic adult is not a viable option, it could be helpful to consider an alternate ritual, as rituals can be powerful tools in helping to process grief (as noted above).
Some possibilities that may be valuable to the autistic individual include:
- attending a private viewing
- participating in a virtual viewing
- participating in a more private ritual, such as a day of remembrance
- making a private visit to the cemetery
- sending a condolence card or flowers to the deceased’s family
- lighting a candle, looking at a photo album, or making a memorial donation
- visiting a park, restaurant, or a place that is associated with the deceased
As many people have experienced during the COVID-19 pandemic, virtual funerals and memorial services are now widely used. This may be a good option if the individual with autism engages in behaviors that could be seen as disruptive or has a need for physical activity that might not be appropriate during the ritual. It is worth noting that some autistic behaviors that are viewed negatively, such as stimming, are methods used by autistic people to self-regulate. Societal knowledge and acceptance of stimming would make activities such as funerals more obtainable for autistic people.
If participating virtually, ask the autistic adult if they would like a supportive family member or friend, if available, to be with them while they watch.
Most religious or nonreligious events around death have accompanying cultural rituals, such as sharing food, looking at pictures and cards, sending flowers, and sharing memories. In addition to or in lieu of the faith rituals detailed on this website, cultural rituals provide many ways for a grieving adult with autism to journey with others through the processes of grief and mourning.
Many religious traditions include beliefs, such as angels and the concept of Heaven or an afterlife, which are supernatural and transcendent, or beyond physical proof. For some individuals with autism, just as with those not on the spectrum, these may bring comfort; for others, the abstract nature of these statements may be confusing. What matters is whether those beliefs are helpful to the individual.
Clergy persons should consider implementing their community’s practices and rituals in an inclusive and affirming way with the understanding of the unique, culturally specific relationship clergy has with grieving autistic adults.
Click the button below for more information about the rituals that different faiths observe to mark a death. The guides describe typical rituals in the Roman Catholic, Protestant, Jewish, and Islamic faiths, as well as secular rituals.
Case Studies – Spirituality & Role of Religion
Mary, 50, was unsure if she wanted to attend her father’s funeral, as she had never been to one before. The funeral director invited Mary and her sister to the funeral home and walked them through what would happen during the visitation, funeral services, and at the meal following the service. Mary asked what she should say to people as they arrived and what to do if she felt she needed personal space. Because Mary’s sister and family were also grieving, the funeral director offered to have a staff member available to sit with Mary during the service and provided an option to signal that Mary needed to leave or step outside at any time. This allowed Mary to feel comfortable with the expectations of the funeral and choices in how and when she wanted to participate.
- How can funeral directors help families in this situation?
- Should the funeral director assume or wait to be told about an autism diagnosis?
- If Mary had not been included, how might that have affected her grief experience?
Eli, 26, finds being around crowds of people stressful; he rocks back and forth and hums to himself when he is overwhelmed. Others who do not know him well find his type of self-soothing behaviors distracting or confusing. During the planning for his grandfather’s funeral, the rabbi asked Eli how he might want to participate. Eli chose to sit in the front with his family; focusing on the rabbi rather than the crowd behind him was less stressful for him. He also left first so he didn’t have to pass the crowd and chose not to participate in the receiving line.
- What did they do right?
- What are some other options for Eli?
- How can characteristics inherent to ritual be potentially supportive for autistic grievers?
Reference: Isanon, A. (2001). Spirituality and the autism spectrum: of falling sparrows. 143.