Recently I had the opportunity to participate in a three-day observation of a controversial communication methodology used with children with severe autism known as rapid prompting (RPM). I will post on my clinical observations in the near future, but feel it fitting to end 2014 with a reflection of a different type of lesson learned–one that I truly view as another gift from my field: the gift of empathy.
Before my observation, I had researched RPM and read the few mentions in
the scientific literature. My concern of course, was the lack of
empirical evidence surrounding RPM. I was extremely skeptical but
curious nonetheless. By the second observation day, I felt a softening toward this unconventional clinical environment. But what was the true source of my emotional shift? Yes, I still had serious clinical questions; was I “drinking from the kool-aid” as a friend teased?
My emotional shift began when I really looked into the eyes of the parents and listened to their stories. These were parents of children with profound autism. Being parents of these children that they adored changed their lives in enormous ways. Mothers shared stories of hiding younger siblings when their child was tantruming, of being unable to leave the house for days, of having to homeschool their child due to severe behaviors. Parents spoke passionately of having to constantly fight and advocate for their children. Of feeling helpless and vulnerable. Of worrying for their child’s future and hoping for a breakthrough.
Although these were not unique parental struggles, spending a concentrated amount of time with these parents and having the time to engage in lengthy discourse about their personal history provided an experience in perspective-taking. I recognized myself in their fatigued eyes, and realized that our lives could easily have traded places with a roll of nature’s dice. They were emotionally fragile; their faces expressed tremendous strain and
fatigue. But amidst the fear were embers of hope. Hope that they were
clinging onto fiercely.
As they glowed with pride over their child’s abilities, clinical questions swam in my head. One mother claimed significant progress after 6 months; another had brought her son for the first time. I was not asked for my impressions or advice, and releasing them would only serve to poke an emotional wound.
Who am I–both as a clinician and as another human being–to ever take away another person’s hopes and dreams? I remember a lesson I learned early in my career that still brings a shameful shiver up my spine:
I worked at an educational facility for severely impaired children in middle and high school. One nonverbal girl was profoundly handicapped across several domains: cognitive, motor, language. Communication was limited to the use of a single button with hand-over-hand prompts.
After working intensely over a six-month period (5x/week individual sessions), I requested a reduction in services. At the parent meeting, the father expressed his goal for his daughter: to have her say “hi daddy”. I started to explain the complexity of this process, giving a detailed overview of the auditory and phonological systems and access to the lexicon. By the time I got to motor planning, the father interrupted me strongly with “young lady, don’t you ever tell me my daughter cannot do something.”
Looking back at that inexperienced therapist, the lesson I have learned through my years as a clinician is to never take away the dreams of a parent or child. As a clinician it is my ethical duty to deliver services that are rooted in empirical evidence. By providing realistic short and long-term goals and objectives, I paint a roadmap of what I feel the child will be able to achieve. However, parents often have much higher reaching goals for their child. It is not my job to tear down those dreams, even if I feel that they are far fetched. Above all, as clinicians, we should respect the hopes of parents and the dignity of the child.
After all, hope and wanting more for your child is the role of a good parent. And the role of a good clinician is to keep that hope alive.