by: Vanessa Slivken, MA, LMFT
Note: In this piece, the author uses both “autistic” and person-first language. While some advocate for person-first language when referring to individuals with autism, many people with ASD prefer “autistic” as an embrace of their neurodiversity.
In April, we had the opportunity to connect with Vanessa Slivken, Executive Director of our Minnetonka site, to reflect on the unique gifts that we can all learn from our colleagues, family, friends, and from our own experiences of living and thriving with ASD. Here is some of what she had to say.
The term “neurodiversity” was coined in 1997 by Judy Singer, a nontraditional undergraduate student whose mother experienced mental health challenges after being a Holocaust survivor, and whose daughter received an early Aspergers diagnosis, just as the term emerged in the diagnostic lexicon. The combination of words in “neurodiversity” gives a nod to the burgeoning field of neuroscience while also integrating the belief in equity for all people expressed in social justice efforts like the civil rights movement. While the term often evokes the experiences of those with mental health diagnoses like autism spectrum disorder (ASD), it also speaks to the remarkable variety in human psychology that we see in all people, every day. And in fact, the emergence of the Aspergers diagnosis makes it clear that ASD extends to the human population as a whole. Many of us have attributes that fall within the rubric of autism
We are all unique. Our experiences, family histories, and aspects of our innate personalities weave together to form our own individual tapestry, our “one wild and precious life”. In the same way, the presentation of ASD varies widely across children’s and adults’ experiences. Dr. Stephen Shore, professor at Adelphi University, himself living with ASD, and many other researchers have pointed out: there may be a widely held, singular picture of what autism looks like. But while certain commonalities do exist – for example highly-focused interests, differences in perception, communication, and social interaction – the expressions of these attributes are as one-of-a-kind as you. That’s why those with ASD excel not in one, but across fields and disciplines: the arts, sciences, business, and beyond.
Seventy percent of those with ASD experience hyperacusis, or extreme sound sensitivity, compared with rates between 5 – 40% in the general population, depending on the study. That’s not the result of a deficit but rather is due to the complex way that those with autism process sensory information. Many autistic individuals remain aware of situational noise that those of the general population would tune out: the buzz of a light, the conversation happening across the room, the traffic outside. With a highly-attuned sensitivity to all kinds of inputs – and especially sound – loud, surprising, or jarring noises, can cause significant distress, anxiety, or even physical pain. Imagine standing next to a fighter jet, engines full blast, and you have some idea of how noisy settings and situations feel for someone with ASD!
When bored or under stress, many people engage in repetitive activities to help stay focused, to distract, or to help them calm down. Some may chew gum, twirl hair, pace, bite their nails, or bounce a leg or foot. Cleaning, organizing, and routines like those at bedtime also provide individuals in the general population with a sense of predictability and safety. Even many exercises like running, yoga, and walking involve repetitive actions and rhythm, producing much the same effect. Those with ASD may engage in similar behaviors, merely in a more-pronounced way. These self-stimulatory behaviors, known as stimming, may include rocking, hand-flapping, or finger-flicking. Just as with hair-twirling and running, stimming may help those with ASD regulate sometimes-overwhelming sensory input, manage strong emotions, deal with pain, or increase focus and concentration. Just as you wouldn’t be concerned or alarmed to see someone practicing yoga or chewing gum, there is no need to be concerned or alarmed if you see someone stimming, so long as the behavior isn’t harmful! As with other attributes of ASD, repetitive and rhythmic activities exist across the spectrum of the human population, with unique expressions of all kinds.
Article 01 of The Universal Declaration of Human Rights states: “All human beings are born free and equal in dignity and rights. They are endowed with reason and conscience and should act towards one another in a spirit of brotherhood.” The fundamental freedom, dignity, and rights of all people extend to all people, regardless of their race, nationality, social status, gender or sexuality, or whether they have an ASD or other psychiatric diagnosis. Rather than isolated beings, we are connected, a continuum, a collective tapestry in which each part, each individual thread, plays a crucial role in the strength and beauty of the whole. In all kinds of ways, those with autism contribute uniquely to the understanding and innovations of the human family. Whether you have a neighbor, colleague, friend, or loved one with ASD or not, a spirit of curiosity and connection reminds us that we are all one.
For more about St. David’s Center’s Autism Treatment and Support Programs, click here.
May. 09, 2024
Jul. 21, 2023
