Autism and Alternative Ways to Communicate

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On a humid summer 2019 morning in Herndon, Virginia, three college-aged boys walked to a local river for an eco-friendly art project involving making mud. As they mixed it with sticks and pushed a paint roller back and forth in it, they were practicing a skill they wanted to improve on: movement. As they were filling in the stencils, the boys turned their various motions into a nonverbal method of communication.

Turning physical movements into speech can be challenging for people with autism and sensory disorders. Both conditions affect coordination and make it hard to perform learned motions-even the ones as seemingly small as the ones people need to speak. In my case, I just often have a hard time finding the right words to say. Alternate communication methods, like spelling it out, have become everyday aspects of life for students at Growing Kids Therapy Center in suburban Washington state. Elizabeth Vosseller, executive director of Virginia’s Growing Kids Therapy Center, says their population of nonspeaking, unreliably speaking, and minimally speaking individuals has a motor-sensory difference at its core. Dr. Connie Kasari, a UCLA professor in the center for autism research and treatment says your mouth is like a limb and your oral system is like an appendage and if you’re not very coordinated, it will affect how well you can produce movement, speech being one of them. The students at the center range from 5 to 54.

The Growing Kids Therapy Center’s “spell-to-communicate” method is a unique one as it incorporates movement into nonspeaking communication. Other hubs for these “spellers” include Atlanta and South Africa. If any of you are familiar with the old show Speechless, it follows a nonverbal kid who uses a board attached to his wheelchair to communicate, so this is kind of similar. Despite the method’s success among some students, Kasari says it still needs to go through more testing, as physically spelling words doesn’t work for all nonspeaking individuals. She says they’re looking for more options because there’s a lot of heterogeneity in autism.

Vosseller says the students fully comprehend conversations going on around them, even though they can’t respond with talking. She says to envision it as losing your voice and going to full-blown laryngitis. You’re not losing your ability to comprehend, just to articulate. Good lesson for the whole modern age if you ask me. Using boards that display the alphabet, or even common stencils, the students spell out words instead of saying them. This simultaneously helps them work on motor skills through physically reaching out, pointing, and touching the board. Other activities like eco-graffiti art (the mud project mentioned at the beginning) also help students practice movement. Vosseller says “practice doesn’t make perfect; practice makes permanent”. All right, doc.

Vosseller further says that money, time, and finding the right research team mean testing the method is an ongoing process. She adds that they have a growing body of researchers looking into this and it takes a while for someone to be interested in researching it. Using movement as therapy has led to positive results for people with other physical differences too though. David Leventhal, a professional dancer who runs Dance for PD, a organization in New York that uses dance to help people with Parkinson’s regain control of their bodies, says everyone is a movement expert because we all have to navigate the world through physical action and people with particular challenges are even more of experts because they’re required to problem-solve all the time. Embodied conscious movement is just a different way of communicating. Vosseller says as motor skills improve, communication improves. It allows them to be part of the conversation instead of the subject of it. This is a great way to encourage inclusiveness. Largely in part to their newfound access to communication, students from the center are becoming advocates for people with autism in northern Virginia.

Let’s take a break and tell a story about someone who has become an advocate. When he was 15, Ian Nordling was almost arrested by police officers in his hometown of Mercer Island, Washington. Now 21, in a joint interview with his mother Rosaleen Presley, explains he caused a disturbance by walking in the street when he couldn’t follow instructions the way the officers directed him to. He says if his dad didn’t show up when he did, the outcome would’ve been different. Speaking about Ian’s incident, Herndon Police Chief Maggie DeBoard says it was likely a result of lack of education on the police officer’s part.

Today, Ian educates officers at DeBoard’s station, helping them understand how to interact with people with autism and other special needs. In an email, he explains he wants people to know how hard it is for autistics to control themselves. Sometimes it feels like they’re a puppet for autism and no matter how competent they are, autism won’t let their brains take control. It may be hard to make sense of it if you don’t have autism. But Ian hopes people can get a better understanding and show compassion and respect to all autistics. DeBoard says she’s grateful for Ian’s willingness to get more involved with the Herndon police department after having a bad experience somewhere else. She says he opened a lot of people’s eyes and all the officers she worked with over the years want to do the right thing but don’t always know how to do it. Ian made a pamphlet guide at the station with tips for how officers can identify and interact with an autistic individual. They were gone within a few days and all the officers keep them handy during their daily work. Nice job Ian.

Through Ian, the police officers in Herndon now know to look for cues indicating a person might not be able to communicate verbally and may have sensitivities to touch, noise and light. These can include acting overwhelmed and running away from officers. They’re now set to implement a special-needs registry so officers can be made aware of the varying needs of people living in the area. This way, if there’s an emergency involving someone with autism or another difference, the police will know how to communicate appropriately.

Hopefully with everything going on with both Ian and the Growing Kids Therapy Center, more people are finding other ways to communicate with not just people with autism, but the world at large. So try to understand nonverbal communicators and what they’re going through. They’re more human than you may like to think.