fdaThe headline alone was enough to make my blood boil. I knew the controversial practice was still happening today but the very fact that it took the FDA until 2016 to move to end this horrendous act is more than unsettling. How in a society that prides itself on being the land of opportunity, a place where all ‘men’ are created equal and endowed by their Creator with certain inalienable rights can we have headlines in 2016 that read “FDA Moves to Ban Shock Devices Used on Those With Special Needs”?

The very thought that any professional who has dedicated his or her life to working with people who have severe special needs would consider, in good conscious, any form of electric shock therapy as a viable treatment option is beyond me. What’s more, frequently the patients who are forced to endure the barbaric treatment are nonverbal or unable to make treatment decisions because of their disability. Yes, you read this correctly a vast majority of individuals subjected to this cruel “treatment” are not able to provide consent.

I realize that there is only one institution known to regularly inflict this ‘treatment’ upon patients. But even one is far too many. The use of electric shock is defended by the organization as being a last resort used only on patients who have been unresponsive to other techniques seeking to minimize (hopefully end) self-injurious or aggressive behaviors. Professionals who inflict inhumane shock ‘treatment’ to individuals unable to offer medical consent have no business working with special needs community.

Being the parent of a child a with severe, nonverbal autism I not only know the fear of not being able to control self-injurious or aggressive behaviors but I also know that my daughter’s mind works differently than mine. She processes pain in a way that I cannot fully understand. My daughter, Caroline, is a sensory seeker. She loves the feeling of her body ‘crashing’ or falling – some days these sensations are very calming; whereas, other days they just “amp” her up. Given that I can never fully predict how she is going to respond to a particularly sensory input, I would never allow a painful stimulation to be applied to end a behavior.

At the end of the day, I will advocate for Caroline to be treated with the respect and dignity that she deserves. Every minute of every day, Caroline is battling to manage a deluge of sensory overload – she must find a way to not only address sensory input but also to engage in activities that allow for sensory output. These coping mechanisms, for lack of a better phrase, help Caroline to more fully enjoy the world around her. People who do not know Caroline well or who do not fully understand autism as it impacts her body, may think my indulgence of sensory seeking is lazy parenting or enabling when it is really a well-researched and very considered response to a challenge that I understand on an intellectual level. I cannot fully understand Caroline’s sensory struggles as I know that when I am dealing with sensory overload it is 1.) rare; and 2.) a fraction of Caroline’s experience. I would argue that few who do not personally suffer from sensory integration issues can truly relate to the self-regulation struggles of those on the spectrum and thus the use of painful stimulus to encourage self-regulation and decrease undesirable behaviors is not only cruel but lacks foundational understanding.

I share all of this to say as Caroline’s parent and chief advocate, it is my job to protect Caroline and to explain her behaviors to others, not to change Caroline to make society more comfortable. It is also important to raise awareness and acceptance about some of Caroline’s behaviors so that she is never subjected to cruel treatment for something that is beyond her control.