In many situations, adults with autism cannot identify their feelings; this may be especially true following the potentially shocking news of a death. Their initial focus may be on resulting changes to their daily routines, life circumstances, or tasks that need to be completed following the death. Processing emotions, dealing with support people, or spending time with family may not be the primary areas of concern that they may want and need to address following the news of a death. Different causes of death may also result in different grief responses.
In cases of sudden death, there is no time to prepare for the loss, which may lead to feelings of shock, as well as sadness or frustration that there was no chance to say goodbye. Validating these feelings can be helpful. Grievers may wonder or even ask, “Could this happen to me?” or have concerns about their own safety or the safety of others. Reassuring the person that they are safe and unlikely to experience the same event, and repeating this information and reassurance as often as needed, can help them feel less afraid and unsure. When communicating with an autistic adult, keep things as concrete as possible, avoid euphemisms, and truthfully relay the facts as appropriate.
Death by Suicide
Suicide deaths are often stigmatized and may be difficult to discuss and understand. When informing a person on the spectrum of a suicide death, it may be important to define terms like “suicide” and “depression.” The generally accepted phrase when describing this type of death is that someone has “died by suicide.” The phrase “committed suicide” is considered inappropriate as it furthers the stigma around the cause of death.
The complexity of a situation that leads a person to die by suicide means that searching for a cause or a clear understanding of why someone died by suicide is not useful, even though we all share a human impulse to ask questions and seek explanations about the inexplicable. Be open to questions and answer them as honestly and with as much information as appropriate, while also acknowledging the unknown. During initial discussions, it is best to avoid discussion of theology around suicide unless specifically asked. Those discussions can be held later if the mourner expresses an interest.
If the autistic person is experiencing suicidal ideation, reach out to local mental health centers or, if they have one, their own therapist or counselor. The National Suicide Prevention Lifeline is staffed 24 hours a day at 800-273-8255; if the person is in immediate danger of harming themselves, call 911. If possible, remain with the person and stay on the line with authorities: explain the person in need is autistic and may react differently than expected to any intervention. Texting “HOME” to 741-741 will connect the person to the Crisis Text Line.
Substance Abuse Death
Death due to substance abuse is often sudden but may not be unexpected if the deceased struggled with addiction for a long time. Explain that substance use disorder is a disease and that while some people recover, some die from it. Provide the facts without excessive detail but always be honest and open to questions. Many autistic adults take one or more medications, so it is important to be sure that they understand the difference between responsible use of their medically prescribed drugs and the misuse of medications or other substances that may cause harm.
Reactions to the news of a violent death may be similar to reactions to news of a sudden death but may include an additional layer of fear and anxiety. The griever may lose their sense of safety and worry about the possibility of a violent recurrence. This response can also occur when the they read or hear of deaths due to injustice that they can relate to in some way (such as hate crimes, police brutality, murder-suicide, or domestic violence). Provide as much reassurance as is reasonable but be honest as well. Openness to questions and acknowledgment of the unknown is important.
Death After an Illness
A death after an illness may come after a period of anticipatory grief. Even when the death is expected, it may feel sudden (“I thought she had more time”). It can be helpful to remind the autistic griever of prior death and/or non-death losses and the coping tools that were supportive and comforting in those situations. Grievers may have feelings of relief after a loss due to illness, such as “she’s not suffering anymore” or “I can have more time with my family members or my own activities now that I am not so focused on caregiving.” This response is to be expected and validating these feelings is important. On the other hand, if the autistic person was providing care, the sudden absence of a schedule that caregiving provided can also result in anxiety due to the loss of structure and routine.