In honor of Autism Awareness Month, I thought I’d share some things that a few folks with autism want you to know about their “behavior.” They describe a disconnect between their body’s actions, and their mind’s intent. Imagine wanting to shake someone’s hand, but you can’t feel your arm, so it just hangs at your side. You will yourself, without success, to orient toward the person in front of you. You open your mouth to say, “I’m so glad to see you,” but instead, what comes out is, “I want french fries!” People interpret your body language as a lack of interest. They might think you are more interested in food than in socializing. This could not be farther from the truth, and these neurological short circuits are behind so much misunderstanding, frustration and loneliness for some on the spectrum.
“The mistake others can sometimes make is thinking that the things that bother my senses also cause me to not want to participate. … true belonging is what I want most. My senses are overactive and my body is underactive in listening to me. But I want to participate in everything, even if it doesn't look that way at first.” - Grant Blasko
“Apparently it is okay to drill normalcy into someone, but it is denial to believe that a normal boy lives trapped behind a wildly uncooperative body. These theories cost us dearly.” ― Ido Kedar
“Because of autism, the thief of politeness and friendship, I have no sounding voice. By typing words, I can … stretch from my world to yours. I become a real person when my words try to reach out to you without my weird body scaring you away. Then I am alive.” — Sarah Stup
“Showing kindness towards those who are different and embracing our imperfections as proof of our humanness is the remedy for fear.” — Emma Zurcher-Long
So, what do autism, movement disorder and neurodiversity have to do with Devenio? Practicing mindful/coordinated movement in a group can create new functional motor pathways in the brain that lead to better regulation, coordination and connection. Yet, when my teenage daughter, who has autism, was invited to join Devenio in Motion, my initial response was “oh, she can’t follow choreography in a group.” I missed the point completely. As I reflect on the years and money we’ve invested in behavioral therapies and related services, I can say with confidence that Devenio in Motion is one of the most valuable activities in which our daughter has participated. It is a safe space that cultivates enjoyment, confidence and a sense of belonging. Devenio creates communities, and for Sarah, being part of this group allows her to appreciate her own unique “humanness.” She feels valued, whether her jazz hands are in sync or not. With a fight-or-flight mechanism that is always in overdrive, Sarah is frequently unavailable to connect, learn and do the things she so desperately wants to do. Her observations expressed below, before participating in Devenio and after, illustrate that this judgement-free zone is the only type of environment in which she can see what she is capable of achieving.
Mirage – a poem by Sarah Dorros, 2016 (before Devenio)
A ghost of a person.
A soul trapped within an unusable shell.
A robot programmed with glitches.
People look but see only this mirage.
They cannot see me.
I am more than I appear to be.
I have thoughts, feelings, dreams.
I am trying to express them,
but they glitch as my stress rises.
I need to be seen to emerge.
Why Devenio is Important to Me – Sarah Dorros, 2018
“Following along in a group is often hard for me, [especially when] so much time is spent in other classes where my slower, disorganized movements stand out. Devenio dance is helping me gain the confidence to do more things that are new. It’s good for my health…and it is definitely easier for me to relax my body around Devenio classmates, whose bodies are in disarray too! I can just be me - no judgements… and that makes me certain I’m with the right group.”
to reach (a destination); arrive (at)…
· a place where I can be me
· a place where I can relax my tense body and learn how to move
· a place where I belong
Happy Autism Awareness Month!
Arielle & Sarah