DATE POSTED: June 26, 2023.

By Roy Richard Grinker

The pandemic and the mandated and recommended restrictions posed many challenges to mourners. But there were distinctive challenges to people with autism.

Mr. B is a grief therapist and death doula in Tennessee whose primary job is counseling autistic boys and girls at a therapeutic residential school I’ll call “the academy.” We met in Sun Valley, Idaho at a conference for teachers, therapists, and administrators who work at such institutions.  

During the pandemic, he said, the number of acute mental health crises he encountered was unparalleled, and he had to improvise. Few of his usual techniques worked anymore because students had so much trouble talking about what the pandemic was and how it was affecting them emotionally and behaviorally. Parents and other family members could no longer visit, and Mr. B often felt he was the only support available. 

Like many people with autism, they had long had trouble managing alterations in structure and routine – getting new roommates or transitioning between classes – and Mr. B was able to help the students accommodate them. But this was new. “I’ve never seen anything like this,” Mr. B. said, “the loss of loved ones – mostly grandparents – coupled with the anticipatory grief… the students wondering ‘Will my whole family die? Will I die?’ ‘Is my family not visiting because they are doing fun things without me?’ “And then there was the isolation because parents couldn’t visit their kids at the school because of our policies during the pandemic.” Families and students sometimes felt the academy was like a prison.

Talk therapy had utterly failed, so “we made our own ritual.”

The students at the academy come from all over the US, as well as from outside the US. The majority meet the criteria for autism and attend the school because, for various reasons, they could not remain at home or in their local schools. Even before the pandemic, they had challenges understanding abstract concepts like death and mourning; most had seldom discussed death with their families, even the death of pets, because their families and teachers were either uncomfortable with the topic or assumed they would not comprehend it. Once the pandemic hit, death was suddenly a central topic of conversation and it triggered anxiety. The school administration encouraged teachers and staff to minimize how much they talked about COVID in front of students and to be attentive to managing arguments among the students about “whether COVID was real or not.”

The pandemic compelled counselors like Mr. B. to confront the topic head on, to elicit questions from students and, if the questions were unspoken, to guess what those questions might be. “One boy named Hunter,” Mr. B. said, “his father died, and he kept asking me questions like: ‘Is he dead?’ ‘Is he alive?’ ‘Is he coming back?’ ‘Is he never coming back?’” The students struggled with the concepts of the reversible and the irreversible as they tried to understand what goes away with death, what stays behind, what is permanent and what is not. “Gifts, photos, letters, those are the things I helped the students deal with because they needed tangible ways not just to grieve and remember but also to understand their feelings.” One boy told Mr. B. that the way he felt about his grandparent’s death wasn’t one of the emotions he had learned in school, that it wasn’t sadness or anger or anything else on emotion flash cards, that “it was something different.” 

One girl, Megan, lost her grandmother to COVID. She was getting so depressed that Mr. B contemplated recommending admission to a psychiatric unit. She had so little direct support from family, to a large extent due to the pandemic, that she had what Mr. B referred to as “autistic burnout.” He defined it as the inability to regulate and comprehend the complexity of emotions they were feeling. Because Megan couldn’t attend a funeral or a memorial for her “nana,” let alone see her parents, Mr. B. held a mock funeral, and later memorial, attended only by him and Megan. They talked together in front of a framed photo of nana and he helped Megan write a letter to nana – “the things she would say to her if she was still alive.” They taped the letter to the back of the frame. Then Mr. B. suggested Megan take something from nana’s life and try to extend it into her own life. Nana, Megan said, loved dancing, so Mr. B. helped Megan arrange a weekly dance class. “She would dance, like her nana, and this was what I called a ‘legacy project,’ to help her in a way that talk therapy wouldn’t.” He said that talk therapy had utterly failed, so “we made our own ritual.”

The more there is chaos and uncertainty, the more important rituals become.”

Lance Clawson, a child psychiatrist in Bethesda, MD understand exactly what Mr. B is saying. The loss of rituals during the pandemic, he told me in an interview, was especially problematic for his autistic patients. “Because many people with autism thrive from having structure and routine,” he said, “the loss of rituals – whether birthday parties, church services, or really anything they had relied on to be expectable – really threw these kids off. The more there is chaos and uncertainty, the more important rituals become.”

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