Disenfranchised grief is grief that is not openly acknowledged, socially supported, or publicly mourned. First described by Dr. Kenneth Doka (1989), the term is used to describe a grief experience marginalized by society. When grief is disenfranchised, complications in the grieving process can occur. These complications can be magnified for a person with autism as well as for people with .
Autistic adults are often disenfranchised in their everyday lives. They often are socially isolated or otherwise marginalized. This is particularly true if they find social situations challenging, if they choose not to engage socially, or if they also have an intellectual disability.
Losses that are frequently disenfranchised include:
- the death of a beloved animal companion
- a non-death loss, such as loss of a job, special activity, or object; a move; or a divorce
- the loss of a caregiver, whether the autistic lives with family or in a congregate care setting
- the death of someone who was important in the griever’s life, but the connection to that person was not known to others (this can be more likely when the individual does not live with family)
- the death of a celebrity or public figure, even when the connection to the celebrity is not understood by others
- a death from advanced age or prolonged illness when death has been expected
- a death that is stigmatized (for example, death by suicide)
How an Autistic Adult’s Grief is Disenfranchised
There are many ways that family members, friends, and others disenfranchise an autistic individual’s grief. These include:
- ignoring their emotional needs during a loved one’s illness
- stigmatizing the manner of death such as suicide or overdose
- preventing them from saying goodbye or visiting at the end of the loved one’s life
- attempting to force, guilt, or cajole the autistic into participating when they don’t want to (“you must be there;” “don’t you love the person;” “you’ll regret it if you don’t go to see them”)
- choosing not to inform them about a life-limiting illness or death
- not recognizing an important relationship (such as after the death of an LGBTQ spouse or partner)
- assuming they do not understand what is happening
- excluding them from funeral or memorial services
- blaming the individual for “difficult” behaviors rather than understanding them as reactions to a loss.
- failing to recognize unexpected reactions, such as laughter, as indications of grief
Responding to Disenfranchised Grief
A professional’s responses can enfranchise grief for an autistic adult. These should be individualized, but may include:
- Supporting the individual to share their thoughts and feelings using their preferred form of communication
- Encouraging acceptance by clergy, funeral home staff, and other funeral attendees of any form of communication the autistic uses
- Advocating for the autistic to be included in activities prior to, during, and/or after a death. This could include:
- caregiving for and/or visiting a loved one who is sick
- helping, as able, to plan the memorial service or funeral
- supporting attendance at any public ceremony, private/remote attendance if that would be more comfortable, or the opportunity to create their own ceremony
- finding ways to honor the deceased such as writing a note to the deceased, placing flowers or special objects in the casket
- providing opportunities for the autistic to share their memories of the deceased, such as art, writing, or other creative or spiritual expressions
- Helping the autistic to visit their loved one’s grave, especially if formal rituals have already happened, or the autistic was not included or able to participate
- Advocating for the autistic individual to not be forced to participate if that is their preference
- Validating the autistic adult’s experiences of loss and of disenfranchisement. For example, be open to ideas that the autistic person may have about ritual—even nontraditional ideas—and resist medicalizing or criticizing their expressions of grief.
- Providing reassurance and helping the autistic person to identify people to provide support, including relatives, friends, and clergy.
Case Studies – Disenfranchised Grief
Arthur is a 48-year-old man who lives in a group home with two other residents. Arthur, Noah, and Benjamin have lived together for nearly 15 years. Their friendship has been a constant in their lives, despite staff changes and other life events. Last month Benjamin underwent was supposed to be routine surgery but suffered serious complications and died in the hospital. Staff at the group home notified Arthur and Noah of Benjamin’s death, but never told them details, including where and when the funeral had been held. One day the men returned from grocery shopping to see Benjamin’s room being cleaned out by a moving company. This greatly upset Arthur. He shouted at the movers, telling them not to touch Benjamin’s things, and then started crying uncontrollably. Arthur eventually retreated to his own bedroom and cried himself to sleep.
- Was Arthur’s grief disenfranchised? Why or why not?
- If you were a staff member at Arthur and Noah’s apartment, how might you approach the current situation?
- What kind of ritual might be helpful here?
Sarah is 65 years old and lives in a community setting with three other women. Her older brother George, with whom she used to live, developed dementia and recently died. No one communicated with Sarah about George’s illness due to fears it would cause her distress. She has since been told about George’s death, but staff assumed she would quickly forget about her brother and move on. Sarah understands that George is dead and is upset that she wasn’t able to spend time with him after moving to the group home. When staff members take vacations or are off work for extended periods of time Sarah worries that they will never return, often losing sleep. Recently, after Sarah shared with her social worker that she is afraid that everyone will leave her, the social worker invited Sarah to write a letter to George and visit his grave.
- Why mighty the letter writing exercise be a helpful therapeutic step in Sarah’s grief journey?
- What could make visiting the grave meaningful to her?
- What could staff members do to ease Sarah’s fears that they will not return?
Juan is 45 years old and does not use spoken communication; he uses adaptive communication through an iPad. He has lived with his mother, Roberta, his entire life and they have a close bond. While Roberta normally can identify Juan’s wants and needs, lately Juan has become aggressive and distraught, and Roberta does not know why. A neighbor told Roberta that her dog, Trixie, recently was euthanized. She asked how Juan was doing, given that he would often watch for them and wave during their daily walks past his bedroom window. Roberta realized Juan probably was distraught wondering where Trixie was and why she wasn’t taking her usual walks. Roberta and the neighbor told Juan about Trixie’s death and allowed him the opportunity to communicate any questions he had. Juan asked several questions; and Roberta and the neighbor answered to the best of their abilities and provided him with links to websites about euthanasia of older animals. After a few weeks, Juan reached out to the neighbor and asked to hold a memorial service for Trixie. The neighbor appreciated the opportunity to recognize and process her own grief over Trixie’s death. Juan, Roberta, and the neighbor held a modest ceremony during which Juan placed a stone on the spot where Trixie was buried.
- How did Juan’s mother and neighbor help Juan with his grief?
- Why and how are animal deaths disenfranchised?
- What was the significance of ritual in this case?
Reference: Doka, K.J. (1989). Disenfranchised grief: recognizing hidden sorrow. 347.