Juicervose, Choo Choo, and Interpreting Autism

When I was driving home last Sunday afternoon, I turned on WPR (Wisconsin Public Radio) to keep myself awake on a boring, tired drive. Unexpectedly, I was plunged into a very familiar, closed, intimate world: the world of autism. The show playing was a Radio Lab production of the story of Owen Suskind and his family, titled “Juicervose.” (The kid’s name being Owen, so similar to Olin, was not lost on me…)

The child in the story developed normally until 2 or so, and then suddenly lost all of his words, and would only say “Juicervose.” The parents were confused and tried to offer him juice, which he didn’t want. They couldn’t figure out what he was saying. He watched a lot of Disney

Olin, Summer ’16, watching a tractor parade

movies, and one day he was watching The Little Mermaid, rewinding and watching a particular scene over and over. It dawned on his parents that he was watching the “Poor Unfortunate Souls” song – where Ariel trades her voice for legs – over and over… Rewinding and replaying one particular bit. The Sea Witch sings, “I don’t want much / Just your voice!” Just your voice. Juicervose. Finally, they knew what he was saying, and the door was unlocked to understanding him.

The moment was just so familiar, and so poignant, I sobbed. Autism doesn’t want much… Just your voice. I didn’t realize sudden loss of language was a symptom. When Olin was that age, he had a growing vocabulary. Then, all of a sudden, he lost everything but “choo choo”. We were confused and worried. For a year and a half, that was the only word he said. We had to figure out what he meant by the context and his inflection.

Another person they interviewed had a severely autistic son who would sit on the floor and rock back and forth, keening, for hours at a time. He and his wife couldn’t figure out why or what to do about it, so they decided to join him. They sat with him on the floor for hours, until one day he looked over, met their eyes, and connected. Our Olin finds strange ways to connect, too. He asks Tim about his work, because he loves farm equipment and wants to know everything Tim did that day. It drives Tim a little nuts to be asked repetitive questions about work when he wants to not think about work… But it’s the level Olin knows to meet him at. Olin reaches out, at least, but the moment when we finally find a spark of connection is just as precious.

The stress level of parents of children with autism is significantly higher than those without (Haisley, 2014). A study at the University of Wisconsin-Madison found that mothers of

At a concert in the park, ignoring the show to line up tractors.

children with autism experience stress levels similar to that of combat soldiers (Devitt, 2009). Suicide/murder rates among families containing an autistic child are also very high.  Another interviewee (a psychologist, his name escapes me) felt that stories like Owen’s could  lead other people with autistic children to a false sense of hope, and subsequently increased depression and disappointment when their child doesn’t ‘get better’. He was concerned that people understand that autism is a spectrum; “If you know one person with autism, you know one person with autism.”

If you know a family with an autistic child, I would strongly recommend giving this program a listen. It made some very good points and was chillingly spot-on in their retelling. I cried at least four different times while I was listening, just because it hit so close to home.

Bibliography

Devitt, T. (2009, November 10). For mothers of children with autism, the caregiving life proves stressful. Retrieved from http://www.waisman.wisc.edu/news/SELTZER6.HTML

Haisley, L. D. (2014, December 11). Parenting Stress in Parents of Young Children with Autism Spectrum Disorders: The Role of Child Characteristics and Social Support. Retrieved from http://digitalcommons.uconn.edu/cgi/viewcontent.cgi?article=1761&context=gs_theses

Radio Lab – Juicervose [Broadcast]. (2017, January 22). Milwaukee, WI: Wisconsin Public Radio. Retrieved from http://www.radiolab.org/story/juicervose/

 

 

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One Response to Juicervose, Choo Choo, and Interpreting Autism

  1. Well written, beautifully told.

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