Cartoons show the trauma of sedation for autistic children
By Louise Kinross
Sammy is a comic about a young girl who needs to be put under anesthetic in an operating room for regular medical exams because she’s autistic and self-injures when anxious.
The comic shows Sammy from her family’s perspective. We hear about her diagnoses, but also her great love of the animated TV character Bluey, and how she uses an iPad and gestures to communicate. We see her mom, frazzled from non-stop attempts to coordinate Sammy’s numerous appointments.
Artist Elsbeth Dodman (photo above) uses interesting techniques to convey how the medical system reduces Sammy’s story—and that of her mother—to a diagnosis. Then we see how traumatic it is for Sammy to wait in a busy, unfamiliar hospital room to be put under general anesthesia. She screams and screams. The final panels are chilling. They convey what happens to Sammy, alone, behind the closed OR door, before she’s rendered unconscious.
Every time I read this comic I see more in it, more things I can relate to, because I’ve witnessed my own non-speaking son held down by health professionals.
Sammy is part of a collection of nine cartoons that tell the stories of children who have repeated sedations in hospital ORs because they can’t tolerate clinic visits with medical specialists and having blood work drawn. Most have autism and intellectual disability, and many are non-speaking.
“It’s traumatic for the child and family and everyone from the anesthesiologist to the booking clerk who has to watch these poor children suffer,” says Dr. Anamaria Richardson, a community pediatrician in Vancouver.
As part of a study at BC Children’s Hospital, Richardson and her research team interviewed 11 parents of children aged four to 25 who are repeatedly put under anesthetic because their behavioural challenges mean medical care can’t be done in regular clinics.
The study found that multiple hospital sedations caused cumulative physical and psychological trauma to children and parents. Families experienced clinicians who didn't understand their child's behaviour; care that didn't meet their child's unique needs; and a lack of communication to coordinate exams so that the number of sedations was minimized. The researchers said this coordination should sit with providers, not parents.
“A parent would say ‘We just had a sedation done for dental, and then we see neurology and they say my child needs another sedation for a lumbar puncture,” Richardson recounts. “The burden of patient management is being placed on the parent, and they don’t necessarily have the capacity to call all the departments and get these things coordinated. Multiple sedations also don’t make sense from a financial perspective, when everything could be done at one time."
To raise awareness of this marginalized population, Richardson connected with Elizabeth 'Biz' Nijdam, a professor at the University of British Columbia who directs the UBC Comic Studies Cluster. Together, they created a project that matched each of nine artists with an anonymous parent interview Richardson’s team had transcribed. The artist was to bring the child's and family's story to life.
Nijdam says comics lend themselves to capturing complex human experiences. “You tell the story at the verbal level, and you tell a different story at the visual level” she says. “The intersection of those two stories creates three stories happening at the same time, which adds a lot of nuances.
"With some comics you see a lot of narrative tension develop because people are saying one thing, and at the same moment, the pictures are depicting a different experience. And it’s not just pictures. It’s how cartoonists use panels, speech balloons and present comics sequentially that make these stories complicated. Not only are the stories complicated, but sometimes the visual and verbal narratives are juxtaposed or contradictory."
Nijdam put out a call to UBC students and professional cartoonists to participate in the project. Coincidentally, some of the artists who were chosen happened to be autistic. “Because they were neurodiverse, they emotionally engaged with the material and really brought the energy and passion,” Nijdam says. “I was moved by how committed all of the cartoonists were.”
Comics can be particularly useful for telling the story of children who don’t speak, Nijdam says. “These children can’t speak for themselves, but they have a story to tell. Using comics allows that story to be embodied. It brings that story to life.
"Suddenly the stories that the children can’t tell on their own are being told and visualized in relation to a body. That humanizes the experience. We see these children thinking or communicating in some way for themselves.
"Comics tell these stories differently, and that’s important because it means they can reach different audiences. The art connects emotionally with people because it captures the subjectivity of this experience better than a written version, and better than an interview transcript, which no one has the time to sit down and read.”
In her artist statement, Dodman writes: "I’ve had my own experiences navigating the healthcare system as an autistic person, so I was really excited for this project and to tell S’s story. I wanted to be able to make changes for kids like S and get people to reconsider how disabled people access healthcare.
"I think one of the greatest aspects of storytelling through comics is that you can show and tell people what happened. You get the opportunity to be a reporter, and the pictures you draw can help convey the very real emotion of the moment. Comics can make you feel like you were there, like a witness. Please be S’s witness."
The comics were part of an exhibit at BC Children’s Hospital in May. Nijdam notes that the one parent who attended took a handful of copies "to help others understand their son's experiences. A comic is something you can give to a friend who doesn't quite understand what's going on with your child."
To improve the sedation experience, the researchers recommend a centralized hospital intake process and nurse practitioners who review patient files and use an algorithm to coordinate as many assessments as possible into one sedation. A second part of the research project involves interviews with 14 providers of anesthesia.
“BC Children’s Hospital is on board to improve care for this patient population, and they have been working collaboratively with us to identify solutions," Richardson says. "One idea is a sedation suite for children with complexity where only one or two kids would be seen a day, so surgeons won’t feel pressure to get another kid in quickly,” Richardson says.
She notes that children who take medications that require regular lab work to monitor their health may not be getting those recommended checks because of their behaviour. “This would not be right for any other patient population, but we’re okay with it for these guys, because why? It isn’t right.”
Check out all of the Exams Under Anesthesia comics here.
