We know that each person's grief experience is unique; everyone processes death differently. Likewise, loss represents different things to different people; some are comfortable expressing their feelings, while others may not feel able to open up and thoroughly work through difficult emotions. This spectrum of response, consistent in the 'neurotypical' community, is represented in the 'neurodiverse' community as well. Sadly, our desire to protect this population because of their perceived vulnerability may lead to our denying them opportunities to express and work through their feelings in their way, on their timetable. As a result, we may avoid fully explaining what the death will mean for them, hesitate to bring them to rituals such as funerals, burials, and memorials that assist with grief processing, and – worse – potentially pathologize their expressions of grief. Approaching death and loss with adults and children who are neurodiverse may require a slightly different approach, but we can still offer them the same opportunities to mourn. Here's how to help.
Delivering the News
The news of a death should be delivered by a trusted individual, someone who knows the newly bereaved and, most importantly, understands their reaction style. If possible (and available), any therapists involved in the person's care, including speech therapists, occupational therapists, psychotherapists, etc., should be available either during or immediately following this conversation. Using euphemisms when telling a neurodiverse person about death is not kind and may further confuse them. For instance, terms such as "We lost her" may not convey the finality of the person's death; someone who takes things very literally may think the person will be found again. Similarly, using the term "passed away" may be confusing since they may not understand that “passing” also means death. "Karen died today, and we will not see her again" and "John's heart stopped, and he died" are better ways to explain things. This use of plain language is the same as when we inform any child (neurotypical or neurodiverse) of death; to be clear, neurodiverse adults are not children, but their varying stages of development make it essential that we don’t assume anything about their understanding of death permanence. Straightforward, precise language is best.
In addition to the actual loss of a person, a death may mean an upset of routine or living situation. Neurodiverse individuals can be more rigid and may respond very negatively to such secondary changes surrounding the loss. For example, a parent or spouse dying may mean a person must move out of their home into a supportive living environment. These potential life adjustments add another layer of loss on top of the death. We need to remain sensitive to the impact of these changes, as they can lead to profound stress and potentially trigger a more significant crisis.
Reactions may be similar to those of the neurotypical (crying, fear, anxiety), or they may be different and unexpected. Laughter or making jokes is sometimes a self-regulating response to upsetting news for some individuals, but it doesn't mean the person is ignoring the loss or not taking it seriously. Occasionally, due to difficulties with communication and expression, the bereaved may use aggressive language or behavior or retreat within themselves. Bad dreams or nightmares may be manifestations of the individual's attempts to come to terms with and accept the loss. Their grieving process may also appear protracted, taking much longer than we think is “normal.” Neurodiverse adults and children may be less able to communicate their need for help and support, so those surrounding them should carefully watch for opportunities to help them work through and express their feelings. We should allow and support all potential expressions of grief, even if they look different from what we expect.
Dr. Tashel Bordere famously coined the term "suffocated grief" to define grief that is not only disenfranchised or dismissed but whose expression is actively punished. This is a real danger for the neurodiverse community, as their reactions and expressions of grief may upset those around them. For this group, consequences for expressing their suffering can be a real threat. They may lack the tools to express themselves in ways that society might deem 'acceptable’ and, among other things, can lead to their being excluded from rituals that finalize the loss and begin healing, such as funerals or memorials. We must strive to include them in all such events and allow them to participate as much as reasonably possible, with supports designed to alleviate distress in the moment. In extreme cases, there may be disciplinary consequences in school, group homes, or even in the larger society, leading to further isolation and suppression of their grief response. It is essential to be aware of these potential consequences and step in to help the person if needed.
While their expressions of grief may need to be approached differently, the neurodiverse grieve as we all do, and they are entitled to mourn in the way and in the time that feels right to them. The danger exists that we will evaluate their responses as evidence of their neurodiversity rather than simply as their personal responses to sadness and loss. Whether socially acceptable or not, their grief should never be judged but instead validated, just as we would wish for our own grief. We just need to remember they may need more time, understanding, and support to work through their feelings.