The Pain of Autism
Why is there so little help available?
Posted Sep 18, 2013
The U.S. health care system is a miserable failure in many ways, particularly in our failure to make appropriate help available to those in great need. All too often, mass murderers are found to be people who have struggled with mental illness yet never received effective help. Before we indulge in beating our chests over that particular problem, let us remember that our bloated medical care system fails many others who do not resort to mass violence—others whose illnesses or disorders are sometimes disparaged or even doubted by many Americans.
I want to tell you about Kelli Stapleton, who is charged with trying to kill herself and her daughter Isabelle on September 3, 2013.
On September 2, 2013, Kelli Stapleton was a mother with a child in urgent need of help. Her daughter, Isabelle, is seriously autistic. Issy is very smart but she has huge behavioral difficulties and becomes physically violent when she does not get her way. Most of her violence is directed at her mother. Issy’s attacks have twice put Kelli in the hospital with brain injuries. She attacks her mother many times a day.
Although the Stapletons started intensive and expensive therapy with Issy when she was two, by the time she turned 14, Issy was not much better. She was bigger than her mother but no less aggressive. Hitting was her answer to being told “no” or being denied anything she wanted. Hitting was her answer to boredom. She could not sit still and was unable to refrain from hitting someone for thirty minutes at a time.
There seems to be no doubt that Kelli and her husband love their daughter. Kelli spent fourteen years as her fervent advocate, caretaker, and sometimes therapist. She spent years searching frantically for help. There are two other children in the family—children that are neurotypical—and Issy’s father is a school principal. Judging from Kelli’s blog, Status Woe, and my own observations of the parents with children who have serious mental problems, it seems that Issy’s needs and problems were the main focus of the family. And they were monumental.
Don’t underestimate the severity of the issue. As Kelli wrote: “Living with her is beyond horrific. There are screaming tantrums, property destruction, hitting, biting, pulling hair, and kicking. It’s always loud and we’re always tensed up to take a blow.” She felt like each brain injury was a small death. The question was never if Issy would injure her again but when.
Kelli also wrote “anyone who is living this level of aggression needs to be able to ask for help and GET IT!!!! These are PROBLEM behaviors. Not ‘annoying’ behaviors. Not ‘pesky’ behaviors. Not ‘typical’ behaviors. These are OHMYGODHOWDOPEOPLELIVELIKETHIS behaviors.”
Their life was hellish, constantly disrupted, always fearful, immensely frustrating.
Kelli finally succeeded in getting Issy accepted into a residential facility, the Great Lakes Center for Autism Treatment and Research. After assessing Issy—during which time Issy injured three of their workers, destroyed a flute and iPad, and broke two of the facility’s phones—the specialists estimated she would need 240 days of residential treatment before she could be released. The insurance company gave them 30 days. Readers of Kelli’s blog donated enough money for another 20 days. The Michigan Education Special Services Association (MESSA) agreed to pay for another 2 weeks for a total of 64 days. Each day was $795.
On September 2rd, when Kelli picked Issy up from the program, she thought they had everything they needed in place for the first time in 14 years. They had won a waiver from the state that would provide a person to work with Issy at home and another at her school. The individuals given these jobs were eager to take the training so they could continue to implement the plan the Great Lakes Center had formulated, which was working. The special ed teacher at the school where Issy’s father worked—where Issy had friends—did not like the plan and thought it unworkable. She had a shouting match with Kelli over it and, the next day, the Stapletons were told their daughter could not attend the school after all. Their only remaining option was for Kelli to move 3 hours away, to near the Great Lakes Center, and enroll Issy in a school there. This would mean leaving her other children and her husband and any semblance of a personal life she still had. Kelli blamed herself this turn of events and felt guilty for having argued with the teacher and alienated her.
On September 3rd, Kelli blogged, “Desperate times call for desperate measures. I’m tired of her autism robbing her of a life. I’m tired of it taking all of our resources (time, money, energy, everything). I’m tired of dying slowly with each traumatic brain injury. But mainly, I’m so DAMN MAD at watching my husband, a good man, work hard and never get ahead. He can’t keep his family safe, and he can’t fix his broken daughter. He deserves to come home and hug his family, pay the bills, kick the dog (that’s a joke) and do what good men do.
Our other children deserve all the time they haven’t been able to get from their parents. All of the attention they deserve. All the help with their homework they can use. They are AMAZING. They deserve to have a childhood.
That poor woman who called. She had no idea when she called me to give me the “not so good” news that I was dancing so close to the edge. [This was illustrated with a photo of a woman standing on a window ledge, looking down.]
What do you do when you’ve done all you can do? When every decision is out of your hands?
I understand why prisoners go on hunger strikes.
I understand why Tibetan monks resort to self immolation.”
The straw had broken. Nobody picked up on the blatant clues that Kelli was suicidal, though she had blogged about it before and labelled herself as suffering from battle fatigue.
Then she took her daughter out into a remote area in the family van, closed the windows and locked the doors, and lit two charcoal burners that would make CO2. Alarmed by a strange phone call from his wife, her husband called the police who found the van. Kelli and Issy were both unconscious but still alive. Both are recovering and Kelli is being held without bail on charges of attempted murder.
Many people have blogged or written newspaper articles about this event. My reading of it is that Kelli had nothing more to give, had used up all her reserves and energy, and felt—not unreasonably —that Issy would never get the help she needed. She also blamed herself for this shortcoming, instead of blaming a system that frustrated her every effort. I am deeply saddened but not surprised she wanted to kill herself and—I believe—felt no one else would take care of Issy after she died. There was no other answer, no where else to go, no case to plead.
Other criticize Kelli as self-aggrandizing, of not loving her child, of committing an unforgiveable sin. Though I do not in any way excuse the attempted murder with which she is charged, I have immense sympathy for Kelli. She had done all she could do. I couldn’t expect more and feel I might have been able to do much less. She kept hoping as long as she could and, when all hope was gone, she chose the best option she could see for herself and her family.
The Stapletons were robbed of their lives, their happiness, their normalcy, not by Kelli but by a vicious disease and by an unfeeling, inadequate system that denied available and apparently successful treatment to those who needed it so desperately. Can we let this continue?