April 1, 2011
A friend asked whether the book “House Rules” by Jody Picoult reflects my family’s experience with Autism Spectrum Disorder (ASD). Picoult not only illuminated some of my life, she also roused a latent fear about what would happen if my adult son encountered the criminal justice system.
“House Rules” unfolds through the interactions among four characters and Jacob, an 18-year-old with Asperger’s who is obsessed with forensic science and a show called “CrimeBusters.” There is Emma, whose life’s purpose is to attend to Jacob; Theo, the younger son, who feels like the older brother and can’t recall when Jacob’s needs haven’t been superior to his own; Rich, the police detective who knows nothing about ASD when he arrests Jacob for allegedly murdering his social skills teacher; and Oliver, Jacob’s tenderfoot defense attorney, who knows little about either ASD or criminal law.
Picoult sought input from dozens of individuals on the spectrum and their families and vetted the manuscript with a young woman with Asperger’s. By weaving facts and theories about autism into the story, she educates the uninformed and, arguably, gives a voice to many who are touched by the condition.
Emma’s single-minded devotion to Jacob is costly. Shortly after the diagnosis, her husband concluded Jacob’s needs would always precede his and filed for divorce. Emma is isolated and lonely. She muses, “As much as I love my son – as much as Jacob has been the star around which I’ve orbited — I’ve had my share of moments when I silently imagined the person I was supposed to be, the one who got lost, somehow, in the daily business of raising an autistic child.”
Jacob’s idiosyncrasies dominate the household. So, teen-age Theo becomes a sympathetic criminal, breaking into strangers’ homes to observe how normal families live. He feels guilt, anger, duty, love and relief that it is Jacob who has Asperger’s.
Emma may be Jacob’s mother and advocate, but she is not his legal guardian, so she cannot be present during the police interrogation. She is fearful that, when observed by someone unfamiliar with ASD who is building a murder case, some of his behaviors or responses could be damning. She tries to explain that he flaps his hands and repeats lines from songs and movies to regulate his sensory system; that he withdraws and stops speaking when overwhelmed; and that he is exceedingly literal. She further attempts to explain about Jacob’s hypersensitivity to light and sounds; his aversion to eye contact; and his rigid adherence to a familiar routine. She worries that if he is incarcerated, he will withdraw, undercutting all her efforts since his diagnosis.
Her fears are realized. When the detective touches his shoulder, Jacob takes a swing at him. When asked what he has in his pockets, Jacob answers, “My hands” and the officer replies, “So you’re a wiseass.” When Oliver, Jacob’s defense attorney, asked Jacob what it means to waive his rights, I anticipated the answer. I imagined how, like Jacob, my literal son might raise his hand over his head and move it back and forth like a metronome.
The police detective holds the perspective of one charged with enforcing the law in a complex society. When the court allows Jacob to take sensory breaks when the questions, lights, or sounds of the courtroom become too stressful, Rich observes, “If the court was willing to bend over backward for Jacob Hunt’s Asperger’s syndrome, how long will it be before this is used as a precedent by some career criminal who insists that going to jail will inflame his claustrophobia? I’m all for equality, but not when it erodes the system.”
The prosecutor reminds us there is a world beyond ASD. She chastises Oliver, saying, “This is murder, have you forgotten that? You may have a client with autism, but I’ve got a dead body, and grieving parents, and that trumps everything. Maybe you can toss the special needs label around to get funding in schools or special accommodations, but it doesn’t preclude guilt.”
When Oliver concludes the best option is to assert the insanity defense, he hands Emma a quandary. For years, she had refused to use Asperger’s as an excuse for Jacob’s behavior, but Oliver implores her to do just that. The dilemma begs the question: Does the condition excuse or explain certain behaviors?
Emma provides structure for Jacob by teaching him house rules. One of them, always tell the truth, becomes seminal in the story. As the adults interact with Jacob, the typically straightforward rule becomes confusing as his mother, lawyer and the arresting officer both dodge and probe for the truth to accomplish their own goals.
Jacob’s arrest and prosecution dramatize a concern I’ve harbored since my son became an adult. While we may advocate for them as children, parents of individuals with ASD will not be able to do so forever. I can imagine a litany of situations in which law-abiding adults with ASD could unwittingly make their way into the criminal justice system.
Individuals who have difficulty communicating, whether because of autism or mental illness or another language barrier, are particularly vulnerable in a system governed by rules, protocols, and agendas that are foreign or bewildering to them. A person with social and sensory challenges navigating a system in which words and actions carry weighty implications is frightening to contemplate.
Tomorrow is the fourth annual Autism Awareness Day. For anyone interested in learning more about it — especially those who work in the criminal justice system — I commend “House Rules.” Granted it is a work of fiction, but Picoult nevertheless offers credible insight that could make personal and professional interactions with individuals with ASD – or any other condition affecting communication – more successful and respectful for all involved. Like my friend, readers can ask the people in their lives who are touched by ASD, “Is this what your life is like?”