Susan Senator
All happy families are not alike...
All happy families are not alike...
Loss and death are an inevitable part of life; how then do autistic people learn to process these events, given their own particular communication, language, and social challenges? How can autism caregivers help their loved ones understand and get through bereavement? To offer insight and help with this universal and painful issue, I turned to the autism community, autistic adults, and autism caregivers for their stories and their advice.
Bryanne Smith is a 38-year-old autistic woman living in Oklahoma. When her mother died of Covid and other complications, Smith found that she could not cry for a week. “Instead, I focused on action: getting us packed for the 17-hour journey from our home in Tulsa to Tucson, speaking and texting with my mom’s friends and family members, letting them know when she passed.” She took comfort in making funeral arrangements, cleaning out her mother’s things, writing up a eulogy, and taking care of her nieces.
Then, Smith remembers when it all finally hit her. Hard. “On the evening of Monday, March 1, after being up for over 36 hours straight, I finally broke down. I was lying in my bedroom here in Tulsa when the sadness of losing my mom came over me. I sobbed loudly, and let the emotion wash over me. The reality of the past week came crashing down. Once I allowed myself to feel them, I began to feel better. I fell asleep, exhausted that night, but I slept well for the first time in days.”
Learning comprehensive facts and perhaps even graphic details about a loved one’s illness and death may not have the same stigma for some autistics that it has for neurotypicals. Gyasi Burks-Abbott is an author and librarian with autism living in Massachusetts. He wrote that when his mother was dying, he really wanted to understand much more about what was happening to her body as she struggled with stage-four lung cancer. “I wish someone had made it clear that my mom was in her final moments, that what sounded like labored breathing was actually the death rattle. Maybe the nurse who said ‘she should just let go’ thought the situation was obvious. It certainly wasn’t to me.” Medical and scientific details, and hard facts, such as even learning about autopsy results, would have gone a long way in terms of closure for Burks-Abbott.
Dixie Redmond, an autism mom from Maine, similarly understood deeply that her autistic son Alex would need a process, a way of talking meaningfully about his grandmother’s death, one that was tailored to Alex’s specific needs and abilities. “I curtailed visits long before she actually passed away. But as she became more ill and bedbound, I brought him in for quick visits, explaining that Granny was ill.” Redmond also explained specifically that “the body stops working, but the spirit continues on. After she passed away, we went to her condo together, and I showed him her hospital bed was empty. Then we went through every room and closet, so he could see she wasn’t there.” Talking about death and dying is incredibly necessary but must be done in a way and with context the individual will understand.
Caregivers should also consider encouraging complete participation in the family’s rituals, as Massachusetts mother Aniko Houlihan Baglaneas Eves did when her intellectually disabled son Yanni’s father died when Yianni was 12. “He saw him in the casket, contributed to the drawings and other things his siblings loaded up the casket with, and he went to the funeral.”
Autism caregivers often have difficulty figuring out what to say to their loved ones about someone close to them dying and how to say it, because of language or cognitive deficits, and also because of difference in or lack of showing emotion. One autism mom from Oklahoma, Paula Haite, wrote to me about her experience helping her autistic son grasp the concept of his grandfather’s death. Haite knew she had to prepare her son carefully and thoughtfully, and presume that he could and wanted to understand that one of his greatest champions was no longer there. “I wrote a social story about the services, about how while we would no longer see him in person we would be honoring the time we spent together (with pictures). Our son was part of the services and seeing familiar people and even staff from his school all seemed to help that day.” It wasn’t until some years later, however, that Haite’s actions were validated. “After the 90-day lockdown of group homes during Covid, our first outing was to a local lighthouse. As we were walking he started crying and when I asked ‘What’s wrong?’ he (of very limited language) blurted out ‘Pa’ (our name for his grandfather, who loved lighthouses). I believe he equated all the losses during Covid lockdowns—things that were taken away—as similar.”
Dianne Glennon is a Massachusetts disability advocate who has an adult sibling with severe cognitive issues. Glennon was emphatic about the need to presume competence with anyone affected by loss: “When our mother died a group home staff person told me that it would not affect my sister (ID/DD, no autism). Like Haite, Glennon understands that just because someone expresses emotion differently (or not at all) does not imply lack of emotion. Far from it. “My sister has lost five housemates, both parents, and other close acquaintances over the years. Her comfort is that ‘they went back to God’ and she talks about what they are all doing in heaven: One is playing checkers with Dad and listening to Frank Sinatra on his headphones!”
Ultimately, the key to understanding someone else’s grieving process is to think about what matters to them, to imagine what was important to them about the deceased, and to then plumb the depths of every and any path of communication that works best for the bereaved, and to use that as the beginning of a conversation. Presume competence and connection, and start there.
Copyright 2022, Susan Senator