Many people called Kelli Stapleton “intense,” and she wore the label with pride. On her Twitter account, @Ragingblond, she frequently joked about using vodka to cope with the stress of parenting.
Kelli Stapleton’s daughter, Isabelle Stapleton (known as Issy), was skilled at mathematics. She was popular at school, liked nail polish and Taylor Swift and loved arts and crafts.
On Sept. 4, 2013, when Issy Stapleton was fourteen, her mother took her camping and made her s’mores using two hibachi grills she bought several days earlier. Her mother then placed the grills inside the van and locked the doors so it would fill with carbon monoxide. Police found them unconscious that evening. Both recovered from carbon monoxide poisoning, and Ms. Stapleton pled guilty to first-degree child abuse.
Instead of reviling Kelli Stapleton for the attempted murder of her daughter, many parents and the media have been sympathetic toward her, with Dr. Phil describing it as a “mercy killing.” The reason? Issy Stapleton happened to have autism.
Issy Stapleton’s mother claimed her daughter behaved violently toward her to the point that she once had to be hospitalized. But few have tried to answer the question of why she acted this way. Most were willing to blame her autism and leave it at that.
Kassiane Sibley, an autistic adult, draws upon her own experiences with abuse to provide an alternate explanation. “My mother’s idea of a good time was to provoke a meltdown, then get in my face, try to hold me down … I kicked her, pushed her off, to survive,” she explains. “My mother was violent first. And I have no doubt that Kelli Stapleton also did things that made her daughter feel trapped, where fight was the option because flight was made impossible.”
If Kelli Stapleton’s own public writings are anything to go by, Sibley is absolutely right. Ms. Stapleton ran a blog called “The Status Woe” in which she discussed her experiences parenting her daughter. She spoke of her daughter in almost purely negative terms, describing her as a “savage beast” and “hard to love,” whose weight prevented her from being “endearing.” Her posts invaded her daughter’s privacy, sharing personal details about her hygiene and eating habits.
When Issy Stapleton was two years old, her mother placed her in Applied Behavior Analysis therapy, a structured intervention for children with developmental disabilities. It’s often billed as a “treatment” for autism, with the goal of making clients “indistinguishable from peers” by requiring them to perform tasks like making eye contact and play in a way that appears normal. Ms. Stapleton believed that ABA could cure her daughter.
“I’ve been in her face since before she was two years old,” Kelli Stapleton explained in an interview with The Coffee Klatch. “It was always touch your nose. Touch the apple. Do this. Do that.” She wondered whether the intervention had in some way led to her daughter’s aggression, noting that “sometimes even making eye contact with her would trigger a response.”
While ABA therapy varies broadly in goals and implementation, certain incarnations raise serious ethical questions. In the past, ABA therapy employed a wide variety of physically abusive tactics, such as food deprivation, slapping and even electric shock. Today, while some practitioners reject these methods on ethical and scientific grounds, others still cling to them. Christine Leaming, a former ABA therapist, recalls being ordered to scream at clients and spray them with vinegar. Em Scott, an autistic woman, says her ABA therapists forcibly held her down, yelled at her and threw her to the floor. These events are not unique to the distant past — a 2008 study from Queens College found that 43 percent of ABA therapists said they would consider using physical punishment.
People who have survived traumatic experiences often experience flashbacks when something reminds them of their past. These flashbacks can lead to strong emotional reactions. Forced eye contact is a common component of ABA programs, so it follows that it would remind Issy Stapleton of her intervention. Another stimulus that triggered her aggression was the word “no.” A loud “no” is frequently used as a punishment in ABA therapy. It’s possible that word also reminded her of her experiences in ABA.
There’s a common saying throughout the autism community: Behavior is communication. When disabled people do things, they do them for a reason. Issy Stapleton wasn’t just acting out because she was autistic, but because she was experiencing trauma.
Issy Stapleton was successfully able to participate in mainstream education throughout elementary school. Ms. Stapleton reported that her daughter had a lot of friends and she also performed schoolwork at her appropriate level. However, in sixth grade, Ms. Stapleton recalls, “her behavior became erratic.” It is neither clear what led to this, nor what form it took. But it led Ms. Stapleton to take her daughter out of mainstream school and send her to a “special needs” school two hours away from her house.
The steps afterward did nothing to reduce Issy Stapleton’s distress. When she was fourteen, she was in residential care at the Great Lakes Autism Treatment Center, an institution with stringent, restrictive methods. Ms. Stapleton explained that her daughter was constantly required to “have quiet hands and feet.” Every two minutes, a timer would go off, and if she kept her hands and feet still then a worker would give her a token. This requirement especially hurts autistic people, who frequently have to move around in order to not feel uncomfortable. Tameika Meadows, who works with autistic people, explains it like this: “Just imagine that your way of de-stressing after a long day is to have a warm bath and listen to music and everyday a therapist stops you right as you go to turn on the bathtub faucet and says ‘No. Hands Down.’ How would you react to that?”
Ultimately, ABA therapy didn’t kill Issy Stapleton. The Great Lakes Autism Treatment Center didn’t kill her either. Kelli Stapleton did. The treatments Issy Stapleton received, and their emotional consequences, might have made things more stressful for Ms. Stapleton, but any other way of dealing with things would have been better. Ms. Stapleton could have sought therapy, as one expert suggested, or temporarily given up custody of her daughter. She could have turned herself in. Even at the last second, she could have opened up the doors of the van and removed the grills.
Calling for improvements in therapy helps poke holes in the narrative that painted Issy Stapleton as a demon and Kelli Stapleton as an angel, but it doesn’t justify what she did. As Julia Bascom, Deputy Executive Director of the Autistic Self-Advocacy Network explains, “When we say, give us more funding or parents will kill their kids, we are saying, very literally: give us more money, or the kid gets it.”
That said, it’s still an important conversation to have. When caregivers and service providers accuse developmentally disabled people of displaying challenging behavior, and blame it on their disability overall rather than viewed as a result of their specific environmental and emotional factors. This encourages others to resent the disability — and the person with it, by extension — rather than seek out ways to work around their impairments and help them. And that can have horrible consequences.