By Lisa Morgan
I have a core belief that I grieve wrong.
It comes from past experiences of losing people I love. During the times in my life when someone dear to me has died, I do not visibly react. My family members or friends cry, speak the right words, hug each other, and collectively acknowledge their sorrow and pain. I feel alone.
No one can see me thinking, so it looks like I have no reaction at all. But what’s really happening is I start thinking of the person. I have a visual memory, so I’m “seeing” them again like watching a movie, remembering the last time we were together. I’m also thinking of things we’ve done before, of not seeing them again, and of what life might be without them. I’m processing the news of their death in the only way I know how. I also experience so many emotions I can’t figure out exactly how I feel, so I don’t have any outward emotions either.
My first experience with the death of a loved one came when I was around 14 years old. While my siblings and mother were crying after hearing the news, I started thinking. Eventually, someone asked if I even loved our deceased family member. I did! I loved them very much. On top of what I was experiencing internally, I also then felt profoundly alone, like I was experiencing the loss all by myself. I felt misunderstood, alienated, judged – like I was a bad person.
Autistic people think, communicate, and experience the world differently than non-autistic people. We tend to think visually, communicate literally, and experience the world through sensory experiences. However – this does not pertain to all autistic people. As Dr. Stephen Shore said, “When you’ve met one autistic person, you’ve met one autistic person.”
Although there’s no one correct way to grieve, there are still societal traditions and a “typical” way to grieve that most neurotypical people feel comfortable around. Autistic people may not feel comfortable or even understand those ways of grieving. They may feel like unsupported outsiders even with their family and friends.
For example, autistic people can feel judged for not crying, although they may prefer to cry alone, or they experience sadness without crying. Autistic people may show their sadness by pacing instead of crying. They may process their grief by making a drawing or painting that represents what the person who died meant to them. Autistic people tend to be very detailed, and that drawing might include the person’s favorite colors, clothes, hairstyle, etc. The same would hold true for an autistic person who wrote something or grew a garden in the name of their loved one. But these expressions often go unnoticed as empathy.
Funerals can be difficult for autistic people in several ways. Funerals are steeped in traditions, many of which may not make sense. For one, having a dead person dressed up, hair done, and in a coffin while their loved ones mingle, may just not make sense to an autistic person. The same holds for singing songs, talking about the deceased person, crying openly, and/or being quiet. To attend a funeral successfully, it is supportive to bring them to the site ahead of time, walk through some of the expectations and social traditions of a funeral service, and also let them know they can leave whenever they want for whatever reason they want.
Change after the loss of a loved one is inevitable, and it can be extremely difficult for an autistic person. But autistic strengths can be utilized while their lives settle into a new normal. For example, being rule-based may help an autistic person to follow a new schedule with new people if there are new rules to follow. These new rules can be made up with the autistic person if they are able to help. Special passions or interests can help make a transition to a new normal or schedule.
Autistic people can still experience “typical” grief responses such as anger, sadness, restlessness, and changes to their sleeping and eating patterns. If an autistic person also has alexithymia, the inability to identify and express emotions, then emotions may be felt physically – with a headache, stomachache, tense shoulders, etc. Autistic people may be able to describe their emotions with pictures, stories, colors, etc. The most important, supportive effort is to listen to what they need, and help them achieve it, even if it is not understood by whoever is supporting them.
Self-care for autistic people must be what actually helps them. It could be their special interest. It could be watching the same movie or hearing the same song over and over again. It could be eating one certain food or color of food. There is comfort in routine and sameness, especially when so many other aspects of their lives are changing.
Autistic people know the most about themselves. It is supportive to always presume competence. It is supportive to accept the ways an autistic person needs to grieve. If autistic people are understood in how they need to regulate, grieve, attend funeral services, adapt to any changes they experience, and even show their emotions, they may truly feel like they are supported members of a community of family and friends.
Lisa Morgan, M.Ed., is a certified autism specialist, consultant, trainer, and author in Kittery, ME. Her website is www.autismcrisissupport.com.
