Disenfranchised Grief

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 them 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; and
• failing to recognize unexpected reactions, such as laughter, as indications of 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.

Reflection Questions

• 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.

Reflection Questions

• 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. 

Reflection Questions

• 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?